4.02.2017

On World Autism Acceptance Day: How to Find Good Writing By Parents

Sitting on Rocks Is a Legit Thing. 
[image: Leo, a white teen dude, sitting on a
serpentinite rock on a grassy hillside.]
It's World Autism Acceptance Day! A day to honor Leo and our friends as valued, loved, and respected members of our communities.

What are some best practices for observing WAAD? As I wrote as part of general guidelines, at TPGA yesterday,
"Since our first and foremost goal is to encourage critical thinking on autism matters, we do need to be careful about instantly condemning those who support autism awareness. Remember to ask yourself: are they honestly working for the betterment of autistic people, or are they demeaning autistic people by using them as piteous props? If it's the former, carry on; if it's the latter, avoid or speak out whenever you can."
Unfortunately, when it comes to WAAD writing from parents of autistic kids, too many take the demeaning route. I find this approach quixotic at best: If you write smack about your kids in public spaces, how could you ever expect other people to treat your children well? As I noted at The Establishment:
"Parenting approaches differ, but mostly, everything we consider “good parenting” fulfills two basic needs: It makes children feel safe, and it makes them feel loved. Parents and non-parents alike tend to scorn any parenting approach that doesn’t meet these goals. That is, unless the kids in question are autistic — in which case parents are too often encouraged to pursue approaches that traumatize and alienate their kids." 
Parents, if you don't want to traumatize and alienate your kids, I suggest you learn how to recognize harmful writing about autistic children, and avoid falling into the same pitfalls. Here four too-common examples of such bad writing, why using these approaches are not useful, and what you can do instead.

1) "I am furious that people celebrate autism acceptance. My child suffers from autism and needs a cure."

Considering autism a curable disease is misinformed thinking. High-support autistic people have always been part of society. That's a fact. Autism is brain wiring. Also a fact. Conclusion: Autistic people need understanding and accommodations, not cures.

Sadly, parents who talk about curing autism are generally the ones most hostile to the concept of understanding their autistic kids. Yet parents need to focus on understanding their autistic kids, and supporting them to live the best lives possible, if anyone involved is to thrive.

Of course, if a child is having a terribly hard time, that is indeed nothing to celebrate. The problem is, too many parents define autistic "suffering" as being ill, being non-speaking, or being violent—and leave it at that. By throwing up their hands instead of pursuing support, they compound any suffering their own kids may be experiencing, and, if they have any influence, spread that suffering to all the kids of the parents who listen to them.

Here's the autistic reality these parents are willfully ignoring: if a child has medical conditions, parents need to address those, while understanding that their child will be healthier and therefore happier—but still autistic—afterwards. They need to understand that everyone communicates, even if they don't speak, and pursue communication options. And there are usually completely reasonable but easily missed factors when autistic kids are aggressive or self-injurious, usually medical reasons. Look for those reasons!

2) "Autism is Hard. There is no reason to celebrate something so hard."

Yes, autism is hard. Hardest for the autistic person who is not being supported or accepted, however. It is very hard for autistic people to be part of a society that does not recognize how autistic anxiety, processing time, sensory issues, social difficulties etc., can interfere with a person's well-being and ability to cope, and harder still when that lack of understanding and acceptance happens at home.

Of course, society's lack of autism acceptance and understanding make it hard for parents and families too. Which is why, instead of complaining about autism, parents should be fighting for wider-spread acceptance, understanding, and supports for autistic people (and their families), so that everyone can win.

3) "My child functions like a much younger child. Waaaaah."

No, your child functions the way an autistic person with developmental disabilities functions, for their age. And they deserve their interests and life experiences to be treated with respect. Why does it matter so much if they choose to spend their time differently from their non-autistic peers?

If you want your child to be happy, then you need learn to yield to and accept their preferences; as long as they aren't harming anyone, they should be able like what they like, even if their interests aren't what you anticipated or hoped for, and even if they are technically for much younger children. Publicly ridiculing or second-guessing your child's passions and development is not only bad modeling, it is questionable parenting.

4) "My child is disabled, unlike those quirky fakers who write neurodiversity articles, work in Silicon Valley, and fight for autistic rights at the national policy level."

Autistic people are indeed a diverse bunch, and that heterogeneity has only been truly recognized for about two decades. It's unclear to me why this is a problem, because that ideally means more autistic people are being identified and getting supports. Plus the autistic people these accusations are usually leveled at, like the staff of the Autistic Self-Advocacy Network, include and work very hard for the rights of autistic people of all abilities. (Most autistic people also consider themselves disabled, whether they have White House appointments or not.)

Parents would do well to read the thoughts of autistic people themselves on the autistic experience, to understand why these "not like MY child" accusations are both often untrue, and hurtful. Autistic commonalities are as real as autistic diversity, and what sort of silly parent wouldn't recognize or appreciate having freely shared insights on autistic struggles and tendencies their own child might not be able to convey?

Also, the autistic kids and adults with the highest support needs are the ones most likely to get those supports, especially in school; while autistic people with fewer obvious support needs are more likely to be overlooked, dismissed, remain undiagnosed, and as a result have debilitating anxiety and depression. Who is being disadvantaged, again?

----

Other strategies for identifying harmful parent writing include noticing where such parents post, and invoking the power of Google. So, if you read parent Ashlyn Washington's recent rant against autism acceptance in the Huffington Post, you might think her stance was legit because she'd been given HP editorial go-ahead—but with a single Google search of her name, you will discover that not only does she believe autism is vaccine injury (not a legitimate stance), she was also posting in the Contributors section, where any Tom, Dick, or Jill can let loose, seeing as "Contributors control their own work and post freely to our site."

I'll end by imploring reasonable, supportive readers like you to call out harmful parent writing when you can, on social media or in the comments. I realize that calling out is confrontational and therefore squirm-inducing; I don't like doing it either. Especially when folks who get called out dismiss criticism outright, or angrily frame reasonable critiques as personal attacks.

But the reason for calling out is not necessarily to get that person to change their behavior (though that would be great); it is to make them accountable for the hurtful things they publicly endorse, and let their readers know that writing awful, misleading, privacy-violating things about autistic children in public is not acceptable.

And with that, we're off to another hiking day, because hiking is something Leo likes to do. I can think of no better way to observe World Autism Acceptance Day. I hope you find happiness today, too.

5 comments:

  1. I agree with a lot of what you have to say, but I wonder where you're living where people with the most significant support needs are getting their needs met, and aren't developing anxiety and depression? In my experience, people with the most significant support needs are more likely to be placed in segregated settings, where they are at enormous risk of abuse. They are more likely to have their needs for communication and literacy ignored. They are less likely to be treated with respect. And when they respond to the situation that they find themselves in by communicating their anxiety and depression through behavior, they are more likely to have that behavior addressed through aversives, extinction, and other harmful ABA practices.

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  2. I didn't say people with high support needs weren't developing anxiety and depression -- lack of parental understanding compounds those tendency for people of all abilities. And as this was a brief overview, I didn't address the segregated setting issues, which also can be problematic for the reasons you listed, and is why I support both classroom inclusion for students, and supported decision making when adults transition out of school.

    What I am referring to is the fact that kids like my 1:1 support son usually (not always but usually) have their needs and accommodations more easily recognized during IEPs. No one questions his need for accommodations in hospitals, doctor offices, on airplanes, etc. Autistic students with lower visible support needs are too often expected to cope with few to no classroom accommodations, and autistic adults, especially if they have competence in some areas, like being able to drive or work in a typical workplace, have their legitimate needs for accommodations ridiculed or dismissed, and have greatly compromised quality of life as a result.

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  3. I think what unknown up there is saying is an important piece. I'm among those "quirky fakers" today as I run my own business, but as a kid in the early 80's, I was a special education student who wasn't expected to succeed. My challenges today are different than those who need daily paid support, but they certainly aren't worse. I don't see why it's worth trying to figure out who has it "worse." These are not the suffering olympics. And not acknowledging how difficult it is to live in a category that has historically meant institutionalization or even being murdered for who they are is putting our head in the sand. Your lack of special education as a child did not make you worse off. Believe me, as someone who lived it, it was a sh%$ show. And it certainly didn't make me have less anxiety. In fact, one doc said that I have PTSD from the experience of receiving special services.

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  4. My high support kiddo is in an autism classroom in a regular school. His class does science/music/art with the general Ed students.
    I absolutely agree with everything you've written in this post. I've read parts of yours & Leo's history in Neurotribes & TPGA. It's really helped me. Leo is several years older than Ben but very similar. Thank you!

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    Replies
    1. Oh, that type of inclusion is the dream. I hope Ben continues to thrive! Great to hear from you, Angie.

      Delete

Respectful disagreement encouraged.

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