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Same Scenario, Different Paradigms

6/4/2015

One of the things about being a neurodiversity advocate that listens to and tries to amplify the voices of Autistic advocates is that I can look at the exact same scenario as someone else and see an entirely different story. Reading one of my textbooks about autism, I ran into this segment.

The book was describing how there had been a difference between a teen on the spectrum's self-ratings of how present they had been in 'body and in mind' during group and the neurotypical adult's rating of the same thing. The teen thought he'd been present, though he was pacing; the adult disagreed. One of his fellow teens spoke up on his behalf saying "He's autistic, of course he's pacing!"

The moral the book took from this is that his statement was a great time to talk to children about what is expected of them by their neurotypical peers. What I read was a teen advocating for his fellow peer for the acceptance of his autistic characteristics; advocating for his right to be himself rather than be forced to blend in with the neurotypical majority. I do understand that both sides have points, but to me the boy's advocacy is something to applaud rather than a time to introduce a lesson about conformity.

-Creigh

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On Parental Guilt

12/18/2014

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On the earlier post on Diary of a Mom, where Katie concluded that to 'cure' her sister would be to get rid of the person that she is, a mother commented about how ashamed that she felt that she had not realized this. She said that she had tried everything to cure her son of autism, and now she felt shame that she had ever tried to do so. I replied to her with the following, and then realized that the rest of you could probably use to hear it as well. So here it is:

Don't feel ashamed. We've all been where you are. But what matters most isn't where you've been, but where you're going. My sister and I have to argue with our own mother all the time, because she and our other relatives feel terrible for not having realized all along Caley's own thoughts about being Autistic. Now they read our blog and are pretty frequently ridden with guilt when we talk about Caley's true feelings and experiences, because, well, holding yourself to the standard of perfection is one of those things parents tend to do, never mind that they would have had to read minds in order to know what Caley's now expressing.

But here's what we tell our mom every single time. You didn't know. When Caley was diagnosed, everyone told you to grieve, to mourn for your lost child, to regret all that she could have been and would never be, and to fight autism for all you're worth. (A psychologist literally told her these things. And even though I hope psychologists aren't still saying that, that is the message we get from society about autism to this day.) You believed them. Because you didn't know, and you could not have known based off of the information that you had. Now you do know, and you're acting on that knowledge. And that, that's the important thing. Guilt paralyzes - knowledge empowers.

This picture is the perfect example of this:

In the photo, Caley is plugging her ears and looking afraid, forcing a pained smile for the camera, while I pose happily for the camera. We were sitting under a bell tower and told the bell could go off at any moment. Caley was, of course, terrified of the sensory onslaught she was about to experience. Mom and I just thought she was over-reacting. After all, the bell wasn't really that loud...right? We didn't know. We didn't understand how she felt, how she experienced her world. Back then she was too young to really be able to explain it, and there weren't the Autistic advocates speaking out to educate others that there are today. Not to mention the fact that this photo was taken pre-diagnosis.

These are the types of moments that parents look back on, saying, "How could I not have seen?" But short of being autism experts prior to diagnosis (which few parents are) or mind readers, there's no way to have known. Thinking about an incident like this in retrospect (which every parent of a child on the spectrum has) shouldn't be a cause for guilt, only cause for understanding going forward. And I will add, Caley doesn't blame our mom for not having known, nor do I. (Which is a good thing, too, because I didn't know, either.) She, too, understands.

I would like to add, my Momma's a danged awesome mom. And I'm sure you all are great parents, too.

-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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What Goes Unsaid

6/3/2014

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So sometimes I read things from friends with children on the spectrum or have experiences with the children I care for that, for privacy's sake, I don't post here. But, had I written about those experiences, here are the points I would have driven home.

1. Autistic people have empathy. If I ever had any doubt, multiple touching and caring events of compassion I've seen from an autistic child would have wiped it from my mind.
2. We really, REALLY need to create a world that accepts autistic people. They are suffering from the way society views them, and we must make it our goal to change that.
3. The Jenny McCarthy "try everything" approach? Yeah, I've seen it at work, and the road it can lead down I'd liken as akin to child abuse.*

If you'd seen what I've seen, or even heard me tell you of my experiences, you'd know these already. But as it is, you'll just have to take my word for it.

-Creigh

*If you are someone who thinks of themselves as trying everything and is offended by my comparison to child abuse...I'm probably not talking to you. The problem with trying everything is that if taken literally, the road it leads to is one where people end up trying things that can cause physical harm to their children (eg the parents who swear by the Judge Rottenberg Center, for a more extreme example). And that is when efforts to help can turn into abuse. No matter how well intended it is, I think we'd all agree that's unacceptable.

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Understanding: The Bridge Between Awareness & Acceptance

4/2/2014

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I have been wanting to write this post for the longest time and today, World Autism Awareness Day along with World Autism Acceptance Day, seems like the most appropriate time to do so.

First, some background. There are two loose, informal sub-communities within the autism community. I already talked about them more within the website, but they include a "pro-cure" camp and a "pro-acceptance" camp. These camps divide the community and, almost like political parties, one's feelings towards either camp generally line up with positions on a variety of autism-related issues, from treatments, to research, to organization.

The reason I gave you this background is that this schism applies to Autism Awareness Day vs Autism Acceptance Day, too. The pro-cure supporters mostly line up with Autism Awareness Day proponents. And Autism Acceptance Day was created as a pro-acceptance alternative and generally intended to be a direct counterpoint to Autism Awareness Day.

To choose to support one cause, awareness or acceptance, is generally to choose to deny another. And so here I stand, stuck in the middle because I support both causes. I support autism awareness, not the cocktail party "1 in 68" kind, but true awareness of the existence of autistic individuals towards the goal of helping children get diagnosed. Granted, I believe the importance of this goal is waning in the United States, as we've done a superb job of making people aware of autism's existence here, but as someone who has traveled abroad, I strongly feel that autism awareness is a critical cause in other countries I've visited, like China.

Yet I support autism acceptance as well. Because I look at what my sister needs and wants and what the children I've cared for over the years would benefit from, and hands down the answer is acceptance. Acceptance, as they say in the community, is an action. It's seeing the autistic individual in front of you and still giving them all the accommodations and therapy that will help them - but at the same time, it's valuing them for who they are. And that is one of the most important gifts you can give any autistic person.

But more than either one of those, I support a third cause, that of autism understanding. Because understanding is the bridge to acceptance. After all, if you're merely aware of autism but think it's a symptom of a disease separate from your child, or that your child is "trapped in their autistic world" a terrible world from which they can emerge if only you find the right treatment, when told that you should accept your child as autistic you're more likely to scoff or even react with horror at the notion than to do so.

I guess what I'm saying is, there are three causes in the autism community: Awareness, Acceptance, and Understanding. Here in the United States, we've done a great job with awareness and we're moving on to acceptance, but before we can get there we need the bridge of understanding to guide us. Thankfully, I think that's a cause that anyone in the autism community would be proud to stand behind.

So this month, I'm going to devote myself to the cause of Autism Understanding, along with Autism Awareness and Autism Acceptance. Each day I'm going to share a new photo that promotes understanding of autistic individuals and seeks to combat stigma and false ideas about autism. Feel free to share mine or make your own.

Together, we can make the world a better place for autistic people.

-Creigh

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Same Scenario, Different Paradigms

On Parental Guilt

Absolute Acceptance Zone

What Goes Unsaid

Understanding: The Bridge Between Awareness & Acceptance

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