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See the Person AND the Label

4/22/2014

Originally posted April 22, 2014

There's a saying that's often applied to disabilities: "See the person, not the label." It's a lovely saying, one which I've used myself before, but I now that I think about it, it only gets it halfway right. Confused? I'll explain.

You see, although the saying implies otherwise, seeing someone's "label" - in this case, the fact that they're autistic - isn't such a bad thing. In fact, acknowledging that fact, accepting them for who they are, getting services to help, and making accommodations for them as a result are very good things that are facilitated by the label, ie diagnosis, of autism. Denial of a person's diagnosis, on the other hand, can lead to a very toxic situation. So we really can't simply seek to ignore the 'label.'

That said, sometimes knowing a person is autistic means we make assumptions about them. And, considering that every autistic person is different, making any assumption is dangerous. Worse still, such assumptions are almost always made in the direction of devaluing an autistic person's competence. And that is not okay. You can't just see "autistic" and then immediately know what someone's like. You have to get to know the autistic person for who they are as an individual.

My point is, being able to see both the person's label (diagnosis) AND the person themselves is not only possible, but also ideal. So when you next see an autistic person, make sure you see them for who they are, including but not limited to their autism.

-Creigh

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Caley's Thoughts on Change

4/22/2014

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Originally published: April 19, 2014

[Written in response to this post by Diary of a Mom about her daughter Brooke agreeing to go somewhere new to eat breakfast.]

Many may not understand why what happened in the link is so amazing so I thought I'd teach you all about change and autism.

I have so little control over my environment. I can't tell when something will happen so I need a constant. Changes that I choose myself are not as scary, because you still have some control, but when there's an unexpected change in plans I feel upset and out of control and scared. If a change is necessary, people can minimize that by giving warning and giving me control over something else. But being understanding of why I'm upset, acknowledging the validity of my feelings, is big. Often they have been pushed aside as silly and that hurts. Being in control of the change that happens and not having it forced on you is important.

- Caley

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Say Something

4/22/2014

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Originally posted: April 18, 2014

When a person on the spectrum communicates something to you, whether it be through speaking, writing, or picture exchange, please listen to them and please reply. Because words don't come naturally to many autistic people, and the words they have gifted you with are valuable. Show them that you see their value by answering back, no matter their age and no matter how grammatically incorrect that sentence may have been. Because that "How are you?" or "Hello!" may seem simple to you, but for an autistic person who struggles with verbal communication (which not all do, by the way), it's a whole lot more than that.

-Creigh

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The Power of Listening

4/22/2014

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Originally posted April 12, 2014

So often we ignore and devalue the words of Autistics. Too many professionals and researchers stand up and pontificate about their pet autism theories, yet refuse to even consider adjusting those theories when autistic people reply that they don't match up with their actual experiences of being autistic at all. Such professionals respond that the autistic person simply doesn't understand the theory and dismisses their claims. This is one kind of devaluing.

Another type of devaluing comes when an Autistic speaks up and makes their thoughts known, yet those who disagree with them systematically devalue their words, not on the grounds of their argument, but on the grounds of their autism. Common examples of this are when an Autistic person says something disagreeing with, for instance, the parent of a child on the spectrum, and the parent replies "Well, your autism isn't like my child's autism." Translation: I'm not going to listen to what you say.

Because here's the secret - over and over in these encounters, the common thread that decides whether or not an Autistic is deemed autistic enough to weigh in on an issue is not whether or not they are deemed similar to the child in question, but whether or not they agree with the other person.

If they agree, the reaction looks something like this: "Look, this autistic person agrees with what I'm saying, thank you so much, autistic person, for your wise insight!"

If they disagree, though, the reaction is much different. "You can write/speak/communicate, so your autism isn't like that of the person I'm talking about." In this 'logic' of course, the writer ignores the fact that they themselves aren't at all autistic, so by their own apparent logic their own words would have no weight whatsoever.

In this great article posted on Diary of a Mom, Barb Rentenbach, an Autistic woman who types to communicate, confronts both of these ignoring tactics. In her post she takes on the false idea of some professionals that she and other Autistics lack empathy (which Autistics have repeatedly protested, yet a topic on which professionals have repeatedly ignored them), and also shows an example of an "autism shut-down", by which I mean someone trying to devalue her opinion about autism and the role it's played in her life. She rises above both admirably and does not seek to shut down conversation with either party, but, rather, teach us all something. She has some very powerful, very valuable thoughts to share. I highly suggest reading them.

In the meanwhile, the point of me writing all this was to say:
Autistics communicate. It's time to listen.*

By the way, for any of you wondering, Caley does sign off on all these posts that I write. For this particular post, given that she's been subjected herself to both kinds of shut downs, she had a particularly strong reaction that put a smile on my face, and I though I'd share it. In her words: "Heck yes. Preach, sister, preach!"

-Creigh

http://adiaryofamom.wordpress.com/2014/04/10/listening-barb-rentenbach-writes-to-andrew-solomon-magic-ensues/

*Yes, that riff off of Autism Speaks' extraordinarily ironic (considering they're the organization that least listens to the words of Autistics) motto was intentional satire.

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Judge Rotenberg Center

4/22/2014

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Originally posted April 11, 2014

Note: The date to submit comments has since passed, but the information about the center is still very real.

GIANT trigger warning for torture. Watch the attached video at your own risk.

In some parent's desperation to find a cure for their children, sometimes they stumble onto something else instead - a "treatment" that is not scientifically supported and, in fact, hurts the autistic person it's marketed to help. The autism world is littered with these, but by far the absolute worst offender is represented by the Judge Rotenberg Center. There autistic people are given strong electric shocks in the guise of "treatment". They call it therapy, but in reality it's abuse.

If you (understandably) cannot watch the video, you may think I'm exaggerating, but know that the center's shocks are so bad that the United Nations itself has called the center's 'treatment' what it is, torture, and asked for an investigation (which the justice department is performing).

The Autistic Self Advocacy Network is calling for action to close the center, in this case by depriving them of the tools they use to shock the children given into their care, and I'm spreading their message here.

"The Food and Drug Administration (FDA) is considering an important action that would ban the use of devices that use electric shock for behavior modification. This action has the potential to close the Judge Rotenberg Center, an institution in Massachusetts which uses contingent electric shocks as a method of behavioral control.

We need to assure the FDA receives as much written testimony as possible regarding this issue. The deadline for submitting statements is this Monday, April 14th.

Your written statement can be any length and can contain any information you want - your opinion about the use of electric shock for behavior modification, other ways of supporting people who have dangerous or difficult behaviors, issues of ethics and rights, research, etc. All comments are important and welcome."

I plan on writing in to express how important an issue this is to the autism community and the harm the use of electric shocks is causing in this case, and you can, too. You can submit your comments here.

The video of the abuse:

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It's the Littlest Things that Count

4/22/2014

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Originally posted: April 10, 2014

I was just reading through some of my old posts to get inspiration when I ran across my post about competence again and I was hit with the power of the moment as though it had just happened seconds ago. Here's the recap for those of you who might not have read it - there was a stranger who told me how awesome he thought an autistic girl was. Come to find out, the girl he'd been talking about was Caley. The contrast between his words and the negative outcome everyone had been predicting for Caley was just so huge and so powerful that I hugged him, a complete stranger, out of nowhere. (Here's the full post)

That moment touched me in a way completely disproportionate with the size of the gesture. He was being nice, sure, but he didn't even realize she was my sister, much less set out to do something as huge for me as he accidentally did.

But maybe that's one of the morals we can take from this story - the importance of small gestures. Because I'm not the only one who has found great power in gestures that would seem insignificant to others. My mother was telling me how one man's kindness to her and Caley in the grocery store when Caley was having a meltdown as a little girl stays with her to this day.

Another mother told me how much it meant to her when years ago her autistic son ate chicken nuggets off of another diner's plate and instead of yelling, the man reacted with compassion. Other stories of similarly touched mothers, like this mother thanking a man for what to others would seem to be merely playing with her autistic daughter, have even gone viral. None of these people knew the indellible impact their actions would leave. But those of us affected do.

And I know that this isn't an autism acceptance or understanding or awareness post like I've been writing this month. But autistic people aren't the only ones who need help - sometimes the people who love them do, too. And we need to realize that even the tiniest gesture of support - a kind word or a moment of time - can mean everything to a person, be it a caregiver or an autistic person themselves, who is battling against the crushing weight of the societal stigma of autism.

So the next time you see someone on the spectrum or their caregiver, particularly if they're struggling, take care to be extra compassionate and kind. Who knows? Your small gesture may leave them a beautiful memory that lasts a lifetime.

-Creigh

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Want to Know About Autism? Ask an Autistic

4/22/2014

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Originally posted: April 8, 2014

When parents' children are first diagnosed, they turn everywhere possible for information to help them understand autism. Their first exposure is likely to come from the professional who did the diagnosis, the next from Google (and therefore Autism Speaks), and subsequent information often comes from books and other parents of autistic children. But there's one critical group that gets completely eclipsed here: autistic adults.

It is ironic, because who better to help you understand your autistic child than an adult who is autistic themselves? And, yet, that is the exact same group whose advice and opinions are not only the least publicized, but often also the least valued.

Today I encourage you to learn from autistic adults and what they have to say. Even if you don't know someone in person, there are many resources online to help make this possible. This miniature blog library collects the thoughts of autistic people on a variety of topics, from stimming to meltdowns.
http://outrunningthestorm.wordpress.com/want-to-know-more-about-autism-ask-an-someone-who-is-autistic/

Better yet, I highly recommend visiting WrongPlanet, the online discussion forum for autistic people and those who care about them. There you can make an account and (respectfully) post questions you have about autism, and get rapid insights directly from autistic people themselves. If you're not comfortable with that, you could try simply reading through the discussion forums. Even that gives a huge insight into the competence of autistic people and their thoughts.
http://www.wrongplanet.net/forums.html

-Creigh

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The Day I Faced Discrimination for Being Autistic

4/22/2014

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Originally posted: April 8, 2014

My discrimination story begins in a surprising place – an autism support group. I volunteered there for many years, caring for children during meetings. One day, a new mother came to the group, and brought her autistic son with her. I asked if I could watch him in another room, and was met with a flat out refusal. I was surprised. I’d been doing this successfully for a long time with many parents’ children and had never been met with anything but appreciation. Why now would this change? At the end of the meeting, the mother approached me, apologizing for not having trusted me with her son. Someone had been talking about another girl at the meeting who was autistic, she said – and she’d thought that someone was me.

In short, even this mother of an autistic child was judging me not by my actions, but by her stigmatized view of autistic people. The moment was made all the more painful because the girl the woman mistook me for? She was my little sister, Caley. Up until that point, I’d never really given much thought to the stigma Caley bore, thinking that people would just see her for who she was. It was a shocking moment for me when I realized that Caley had to confront that stigma every single day.

Looking back at my sister’s life with that revelation, I now realize that her entire life has been shaped by stigma. When Caley was growing up, people were quick to tell us what she couldn't do. She'd never go to a ‘normal’ school, never read, never write an essay, never pass an Honors class, never pass an AP class, never go to college, never be able to live away from home. In short, Caley would never be where she is today, having done all of those things and more. Yet with each new hurdle passed, and each naysayer discredited, a new person steps up to take their place. Are they judging her for who she is or what they imagine an autistic person to be? Given how successful she’s been, it’s clear it’s the latter.

The problem isn’t with the label of autism, but with what we imagine it to entail. There is a stigmatizing narrative in society that autistic people are not only different, but also lesser. If you were to imagine an autistic person based on this narrative and nothing more, you would imagine a person who cannot communicate, is unintelligent, emotionless, violent, incompetent, and needs to be saved from themselves. Yet those of us who know autistic people know little could be further from the truth.

But in recognizing the problem, the solution becomes clear. Stigma comes from ignorance and misinformation and the best weapon to combat that is education. So not just this month, but every month, I’m going to ask you to take up arms against stigma. If you’re new to the autism community, make an effort to learn about what autistic people are actually like. And if you’re an old pro, join Caley and me in educating people about what being autistic really means. Every single time you hear someone spread a harmful myth about autistic people, whether it be online or in person, speak up! Your actions may feel small, but know their impact is huge.

Working together we can make a better society for autistic people.

-Creigh

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Catching Up!

4/22/2014

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To all of you lovely ASE readers, I have an announcement to make! In the Fall I will be starting graduate school for speech-language pathology, concentrating on - a surprise to no one - autism.

I am so excited to be going down a path that can do so much good for the autism community and reading this article today just cemented that excitement. I can't wait to get this training and become not just an autism community member and family member, but an autism professional as well! In the meanwhile, know that starting in August you can expect a lot more speech related posts about autism! Wish me luck!

In the meanwhile, I'll be doing another catch up on posts, putting what I've written on Facebook here on the blog. Hopefully you like them, and again, if you haven't liked it already, like our Facebook page!

-Creigh

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Stimming Has a Function

4/6/2014

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"Stimming," or self stimulation, is a repetitive motion or sound that autistic people make. Common examples involve hand flapping, rocking, spinning, making repetitive noises, etc. Autistic people aren't the only ones who stim - if you've ever tapped your foot, doodled, or played with your pen, you've stimmed, too.

Stimming is not a meaningless behavior. Talking to autistic people, over and over they've told me that being able to stim helps them focus and navigate their environment, and feel better overall. If a person is stimming, it's to serve an internal need - a need for sensory stimulation, a need for emotional self regulation, a need to express anything from frustration to joy. And by fulfilling that need, stimming helps autistic people to navigate our neurotypical constructed world.

Because stimming is not generally physically harmful (the pro-stimming argument is only intended to apply to non-harmful stims), many autistic people see inhibiting stimming as an effort to force a person to hide their autism and, therefore, hide and be ashamed of what many consider to be an inherent part of themselves.

I have heard many reasons as to why stimming should be eliminated or controlled (again, back to the "quiet hands"). But in the end, that's all they are. Excuses. Justifications for forcing a person to stop stimming towards the goal of making them seem "normal" even if it's by repressing something that they, adults and children alike, so clearly say they need.

Caley stims. Flapping, vocalizing, picking at a blanket, she's done it all for as long as I can remember. If a stim was hurtful, we worked to find another outlet, but other than that if Caley's stimming, I don't try to stop her or even redirect her. She's using a behavior to serve a function to help her and that's more than okay, that's great! I might offer a great big bear hug (the best I can do in that regard, at least, unfortunately my "little" sister is now bigger than me) to provide sensory stimulation and help support her if she wants it, but I wouldn't dream of telling her "quiet hands." Luckily Caley and I grew up in a household where the idea of quiet hands didn't even exist, but not every autistic person is in that situation, to their detriment. Below is an article from an autistic woman describing her experiences with "Quiet Hands" and how negative it was for her.
http://juststimming.wordpress.com/2011/10/05/quiet-hands/

Hopefully after reading this post you understand. Autistic people stim, and that's not just okay, that's a good thing because stimming is a behavior that can help autistic people self-regulate and just plain feel good. Efforts to try to eliminate stimming are misplaced and, in fact, many autistics say that such attempts are hurtful.

Instead, I propose that we use our energy to eliminate the stigma of autism and therefore the stigma associated with stimming. Because unlike stimming, stigma actively harms autistics, whether at home, in the workplace, or at school. Share this picture to teach others the important function that stimming serves to help autistic people and comment with your loved one's favorite stim. Together we can make the world a better place for autistics and in this case that means a world where they can stim to their heart's content without worrying about how "loud" their hands are.

-Creigh

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See the Person AND the Label

Caley's Thoughts on Change

Say Something

The Power of Listening

Judge Rotenberg Center

It's the Littlest Things that Count

Want to Know About Autism? Ask an Autistic

The Day I Faced Discrimination for Being Autistic

Catching Up!

Stimming Has a Function

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