A Documentary About “Scary” Kids Scares Me—On Behalf of the Kids

One of the families featured in A Dangerous Son (Source: HBO)
[image: A white family of four, with two young kids, on a couch together.]

Kit Mead
kpagination.wordpress.com

Content note: Discusses violence and abuse regarding children with mental illness and disability, and the Newtown shootings.

I'm not going to watch “A Dangerous Son,” the HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” I'm going to avoid it mostly because I have already read all of those stories. Again. And again. And again.

And I have found them incredibly disturbing each time—on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs points out: Across violent and abusive sets of environments, we—the kids—are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Parents saying we are desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

.  .  .

It’s possible to advocate for and with children who are struggling and vulnerable with some level of dignity, as I have pointed out before, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

.  .  .

After the Newtown shootings and a particularly bad Gawker article called I am Adam Lanza’s Mother—written by a parent about her 13-year-old son—Savannah Logsdon-Breakstone wrote an article describing being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:

"My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that Gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions. 

"Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose."

I Am Adam Lanza’s Mother inspired A Dangerous Son. The author is featured in the movie.

.  .  .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

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The Stories We Don’t Tell: My Mom On Raising An Autistic Child And Why She’ll Never Write About Me

Sarah Kurchak and her Mother Jane Kurchak
 [image: Cheerfully geeky selfie of the author, a white Canadian woman wearing
glasses and also goggles on top of her head; and her mother, a white woman
also wearing glasses plus a pinstriped blue collared shirt, tie, and white jacket.]

Sarah Kurchak
www.riskyfuel.com

When I’m feeling particularly frustrated with my career, I offer to ghostwrite a memoir for my mom. It’s a slightly bitter, semi-serious joke. I’m mostly taking a shot at the fact that the memoirs that non-autistic parents write about raising their autistic children have a much better shot at getting published and selling than anything that I, as an autistic person, could ever hope to write about autism. But there’s also a little part of me that just wants that payday. (I can’t extend this offer to my dad, because he’s a fellow autist and no one seems particularly interested in hearing what autistic parents have to say about these things, either. Or acknowledging that autistic parents even exist.)

My mom is a funny person, and usually quite indulgent when it comes to my humor, but she always shuts this joke down pretty quickly. Even in jest, her answer is clear. This isn’t her story to tell.

As I’ve watched the autistic community respond to the latest offerings from this wretched subgenre and wondered how I could contribute to the conversation at a time where I don’t feel intellectually or emotionally equipped to properly tackle the issue as a writer or an advocate, I kept coming back to this point. So I asked my mom to read two of the most recent and high-profile examples of the Autism Parent memoir, Judith Newman’s To Siri With Love, and the excerpt from Whitney Ellenby’s forthcoming Autism Uncensored that was recently published in The Washington Post. And then I asked her if I could interview her about them. And about us.

The following has been lightly edited for length and clarity. And I’m not so sure it helped the latter. I’m not convinced that I perfectly articulated my points, but it’s the best that I can do right now and I’m hoping you can get the general idea from what I have said.

People argue that no one represents the real autism. This, in its somewhat rambling, possibly overly earnest, and well-meaning glory, is also the real autism.

Sarah Kurchak: You read To Siri With Love recently. Can you give me your general impression of that book?

Jane Kurchak: OK, what I went through while reading was a range of emotions. Mostly it was anger, and then sadness. But, I guess, ultimately I felt that Gus was the punchline and he wasn’t in on the joke. And that bothered me. And I kept thinking…she’s his mother, and that individual that should be the most secure person, place, everything on earth was [instead] doing this end run behind him and telling the whole world about his bathroom issues. And it wasn’t her story to tell.

I always put you in the kid’s position. How would you feel if that were going on? How would you feel? How is Gus going to feel in ten years when maybe the reality of that book hits him? It may or may not, but it still was never her story to tell.

Another thing that bothered me were the number of people and celebrities that were gushing over this book. I kept thinking…why is nobody saying to her “Maybe you shouldn’t be telling Gus’s toilet secrets?” I don’t know. So that’s what Siri did to me. And, in that case…I never, ever questioned that she loved Gus. I just don’t think that she went about all of this the right way. And who am I to judge? But she put the book out there. It’s for all of us to read. We’re going to have opinions. And I just don’t think that was her story to tell.

Which brings us to the article in The Washington Post that we read last week, which was called “Bystanders were horrified. But my son has autism and I was desperate.” Can you give me your general impressions on that?

That made me cry. As upset as I was with the whole Siri book, that pales by comparison to that article I read. That’s child abuse. It is. And, again, I put you in that kid’s position. And never…and I’m not saying that I’m parent of the year, or any of those things. I stumbled through this. I didn’t know. But I cannot, for the life of me, ever ever imagine thinking that was a good idea. To do it wasn’t a good idea. And to write about it is as repugnant as the action.

I was thinking…what the eff is that lady thinking? “I was desperate? People were watching me?” You took him into the damned situation in the first place! This isn’t about her. It shouldn’t be about her. She wanted him to see Elmo.

What I noticed in that piece, even more than in Judith Newman’s observations, was that she kept blaming situations on her child’s autism that were actually problems involving people’s perception of her.

This is all about her. This is all about her.

I try to have sympathy. Not just as a human, but as a writer. Because I think we do have somewhat different boundaries. And yet…I am also someone who has significantly benefited from other people protecting my boundaries so that I could get to the point where I could decide to reveal perhaps too much in certain situations. But even though I am an open book in a lot of ways, there’s a lot of stuff that people don’t know.

And there’s a lot of stuff that is probably going to get weirdly meta in this conversation, where we’re going to talk around what we don’t talk about in my life, so that it can’t be Google-able and people can’t attach things that still have a lot of stigma around them to me, so that I can continue to survive and function as a person in the world and as a writer. As small as my profile is, it’s still a public profile. And none of that would be possible if you and dad had ever been more public about my life.

And we’ve talked about this before. It never occurred to me to make any of your stuff public. We talked about your sleep thing. We all knew about your sleep thing and I joked about that. “Sarah didn’t sleep! That’s why she’s an only child.” There were jokes like that.

There are other situations that we will never discuss. But they were never insurmountable and I can tell you that when some of those things were happening, I would simply say “She’s not going to be doing this at ten. She’s not going to be doing this at sixteen.” It was in the moment.

Do you remember…of course you remember wearing the Smurf hat to Pupo’s [Welland, Ontario’s most beloved grocery store].

I also remember wearing the Smurf hat in grade nine.

I do, too. But that was a bit of a dare, and you go for it. But you loved that hat. And then remember we had to convert it into a Smurfette hat, and you had those big yellow yarn braids hanging down? I loved that you wanted to put that on your head and wear it to the grocery store. You had so much fun doing that, why would I not have gone along with that?

And I do want to be clear for anyone who is going to read this and think this is just an example of someone who is quirky and not “really” autistic: This is an example that we can talk about freely. There are other ones that are way more private that we’re not going to get into. But your choices in all of these situations came from the same compassion. They all came from the same logic. And ultimately ended up benefitting me in the same way, too.

Yes, I can see where you’re going. Yes.

In this conversation, we’re talking about To Siri With Love as a book, because we’ve both read it. We have only read Whitney Ellenby’s article that was published in The Washington Post. We haven’t read Autism Uncensored, her forthcoming book, as a whole. And this is, in part, because you have asked me not to. So can we get into why you asked me not to read this book?

Your level of empathy can be debilitating. You’ve always been like this. Always. And I see your daily struggles. I see you try to function in a pull-up-your-bootsraps neurotypical world. And I know if you read this book, it will crush you. It will take a bigger toll on you, by far, than Siri did. And, as your mother, my concern is your ability to continue functioning carrying that level of upset. So it’s a selfish motive because I don’t want you to hurt and I know that what we’ve read is only a small part of what’s gone on. I don’t want you to read it.

If you were a writer, and you decided to write about me and my childhood, how do you think you would approach it versus what you’ve seen from these parent memoirs?

I have always said to you, to anybody that will listen to me, I have learned more about life in the world from you than from anyone or anything else. And if I were to write, it would be about the lessons that I’ve learned from you. Nothing that you’ve learned from me, but what I’ve learned from you. Only from my perspective. I would never, ever expose, without your permission, any of the incidences that have happened. But every one of those was for me to learn more than it was for you to learn.

So I guess it’s that. Watch your child and learn from them. Take you cues from your child. Just because I’m your parent doesn’t make me right. I would write about how you enrich my life. And people might read this and think “You have to say that. You’re a mother.” They can think what they want. My reality is that my life is a better life because of you. I’m a far more tolerant person. I’m a far more understanding person because of the lessons that I’ve learned from you. Not just because you’re autistic but because you’re autistic and the way you view things and the way you approach things has taught me a different way of viewing and approaching. So that’s what I would want people to know.

So I think we’ve already touched on this a bit but I’m going to try to get a bit more explicit because, for me, this isn’t just an issue of what we write about autism. What concerns me is that this gets to the heart of the stories that we tell about autism in daily life. And when I approach these books…I’ll admit, part of it is professional jealousy, because I want to have at least a fraction of the platform that these people have. I want to be able to write about my autistic life or write autistic characters that can make the next generation feel less of whatever the hell it was that I felt growing up.

But it goes beyond that, too, because I am someone who has benefitted—and, I would argue, only survived and reached this point—because of the stories that nobody told about me. Because I had parents who didn’t exploit me, didn’t film my meltdowns, didn’t tell people about, say, how much I lost my shit at the dentist every time I went, didn’t talk about my toilet training, my utter attachment to you to the point where you couldn’t really go anywhere alone without me freaking out. And these are all things that, again, I want to point out to anyone who is reading this, I am glossing over because this is as much detail as I feel safe revealing under my byline now. The only reason that I feel that anyone can come at me and say “You’re not autistic enough to count” or “You’re not the kind of child that they’re talking about here” is because, when I was that kind of child, no one told on me. When that happened, you would take me out of the situation. No one saw it. And then you wouldn’t talk about it later.

And it would never have occurred to me to talk about it later.

You also, I want to point out, suffered because of that. For all of the talk about autistic kids not being aware of their surroundings, I was hyper aware of the level of criticism that you and dad faced, often when I was around, for ostensibly coddling me, or overprotecting, or spoiling me. Obviously it never occurred to you to say anything, but it could have alleviated your burden if you had told people why you were doing it. And you never did.

No. I never really thought of that before. It didn’t occur to me.

We knew what worked for you. If we were to go into a situation with you, we knew what worked and what didn’t. So if we had to remove ourselves from that situation and hang out somewhere else, what was the problem?

I guess there’s a price that you pay…and people judge. We all judge. But we’re so…who wrote the damned book? Who wrote the book on how society has to function? What’s normal? We can apply it to your temperature, but we certainly don’t need to apply that to behaviour.

I think people assumed that I was a nervous, clingy child because I wasn’t pushed enough, when the reality was that you guys were like that because I was a nervous and clingy child and any steps I’ve made in life are because I have a secure home base. A safe place where I’m never going to be exposed or judged or unduly pushed into something.

And that’s what I feel like every single parental home should be, regardless of if you’re 6 or 36. You should be able to come here, to decompress, and the world doesn’t get to peek in.

My main point that I wanted to discuss here is that I’ve been protected by what you and dad didn’t share, but I also want to say that I think I was really nurtured by the fact that you didn’t bring any outside measurements to my growth and development. Ever. You always always wanted to work on my terms and do what actually made me succeed or survive, or grow. I bring up that shoe story that was in Refinery29 to parents a lot, because I think it’s a great example of how practical you were. The modifications didn’t help. They made me sad, because they ruined my shoes. So you were like “That’s not the solution.”

Unfortunately, because of the narrative that we have around autism now, so many parents are so scared of screwing up and so scared of having these autistic children who won’t be “normal” in the future that they just keep hammering away at one thing, even if it’s not working, even if it’s harming their child, like it’s the only answer.

So again we get back to society’s expectations is driving these parents to make these ridiculous decisions. It’s all of these benchmarks. Why are those the rules?

We should probably wrap this up, but one last thing that I want to say is that I am not just concerned about what these books reveal about their subjects and how that harms them, but I’m also dubious about the purpose of them at all. These are books that are intended to expose the “real” autism or shed a light on the plight and what I wonder is who this level of awareness serves. It seems to me that, as long as the actual issues that they’re talking about have stigma attached to them, we’re not helping autistic people by talking about them in this way. We’re helping carers, because people will sympathize with them. If using a diaper is still stigmatized, then talking about an autistic person who uses a diaper is only going to make people sympathize with the person who might have to help them with it, as opposed to helping people accept that some people just happen to use diapers.

Until the actual autistic needs and behaviors are accepted, I don’t see any purpose to this kind of awareness beyond narratives that peddle in tragedy and the lionization of non-autistic people.

That’s it exactly. I don’t know a catchy phrase for it. But they put it out there, you see how the public eats it up and it’s permission to be the victim. So that’s why it’s going to sell. And I bet there are a lot of…I have no idea what the statistics would be, but there’s no way in the world that Dad and I are the only two who let it play out this way. There have to be a ton of people like this, but those stories just aren’t as exciting.

I’ve become associated with a lot of great parents through Twitter, and I know they’re out there. Unfortunately, part of what makes them great parents is that they don’t dominate the conversation, so you don’t see them.

So you’re going to write a story. You know, when you write that story, you’re going to expose yourself to more criticism.

Yeah.

And I’m not going to lie. I think about that. And I wish it wouldn’t happen. But I have to say, in this case, you’ve taken it upon yourself to help someone that can’t really speak for themselves and I’m so fucking proud.

It’s not that they can’t speak or communicate, it’s just that I am lucky enough to have slipped into a platform that…you know, I might have a higher profile career if I weren’t autistic, but it’s still more than a lot of great autistic writers and bloggers are afforded. And I’m just…I don’t know…what is any of this for if the next Sarah has to live all of this the exact same way?

OK. And I just want you to know that I’m proud.

I’m wondering if it’s going to seem incredibly self-serving if we end on my mommy being proud of me.

Well, you can decide whether you want to put that in or not. But I’m not just throwing that in. I am.

----

Originally published at Medium

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Autistic, Gifted, And Black: An Interview With Mike Buckholtz

Music producer, actor, and writer Michael "Hot Mike" Buckholtz is also an advocate for autistic people, especially those who, like himself, are part of the Black/POC communities. We recently chatted with Mike via email about his background, some specific challenges (and deadly prejudices) Black autistic people face, and ways he thinks younger autistic people of color can empower themselves. You can follow Mike on Twitter at @OfficialHotMike.

Mike Buckholtz
[image: Black-and-white photo of Mike Buckholtz: a Black man
wearing a silver suit, glasses with blue lenses, and pulled-back locs.]

TPGA: Can you tell us a bit about your fabulous career in music and entertainment, and whether being autistic has been a factor?

Mike Buckholtz: I started out as a Hip Hop music producer for MC Hammer beginning in 1989. Hammer and I met in 1984 in the U.S. NAVY as barracks roommates. MC made a fantastic statement about that time. (I'll let him tell it.) As of  November 2016, MC Hammer has sold 50 million records, some of which I've had the honor to work on.

After MC Hammer, I worked for other labels, signed a songwriter's deal with Warner/Chappell (whom I'm still with) started my own management corporation and authored a self-published book about autism. I'm, also, currently, doing the acting thing and another major book project is in the works.

As for the autistic factor, I've had some years to consider how it may have affected my career. The many tests and observations, from professionals involved in my diagnosis, helped me discover special abilities including a photographic memory, high audible sensitivity and a stubborn tunnel-visioned focus. I use every bit of these abilities in this industry and have sharpened them once becoming aware of their benefit.

TPGA: How did getting an official diagnosis, and understanding that you are an autistic person shift your self-awareness, if at all?

MB: Coming to the conclusion (after all the testing) that I wasn't crazy or losing my mind was an important discovery. Knowing that my brain is wired to do specific things helped me build a positive perception of myself as unique versus damaged. I'd say that was a massive shift for the better.

TPGA: What are some specific positive experiences of being both Black and autistic that are lost to people who don't share your experience?

MB: The positive for me? OK. Follow my logic, here. “Black” people on the spectrum are not covered in the media very much, if at all. So, the perception is, since very few, if any, POC (people of color) are on the spectrum, the large majority of “Black” people must be... "normal." This misperception allows me to do business "under the radar," because I can choose to avoid being patronized or pitied. Otherwise, because of stigma, it would be difficult for me to secure a decent living and do serious business. This prejudice is ten times worse for Black and POC. I can't do my work with that kind of hassle. It sucks, but that's my reality for the kind of work I do.

The other positive, I've been told, is that other Black and POC see the revealing of my autistic status as empowering for them. I don't see myself as a role model, but, if openness about my diagnosis empowers other POC toward the positive, I'm all for it.

TPGA: How connected are you to the Black and POC autistic community, or to other autistic individuals, and are those connections a source of strength and comfort?

MB: I have a few amazing intimate relationships with some, a cozy cordial relationship with groups of others and virtually no relationship with the majority of autistic POC. It's complicated. I have deeply private ways of drawing strength and comfort. I'll leave the matter there.

That said, I want to do more to connect with Black and POC in our autistic community. However, much is expected of me due to being a public figure. Being public is expensive. Folks want to see more of me and that's cool, but, I don't have some bottomless budget allowing me to do that. For those who want to see or hear from me in major public forums, sponsor my visit. I'll do it! I'm proud to be an autistic POC and really want to share my experiences. I have some pretty cool stories that may help other autistic POC persevere through our many difficult experiences or circumstances.

TPGA: We already know the rate of anxiety disorders among autistic people in general is already much higher than the non-autistic population. Can you talk about why that anxiety may be even more intense for Black autistic people, and how for you it sometimes feels like "living under occupation"?

MB: Black people (men, specifically) are seen, by many, in society as dangerous, suspicious, and without moral compulsion, first. This, I feel, has been by design for hundreds of years. I don't see it changing. This reality makes life even more intense for Black autistic men.

You may remember a very popular news video of therapist Charles Kinsey (lying down with hands up) and his autistic client, Arnaldo Rios, not moving at all, but, seen, by police, as dangerous—and shots were fired at both of them. Even a Black man attempting to protect an autistic person of color will get shot at...for no reason, apparently. We cannot assimilate. Our brown skin is not interchangeable.

Since simply being brown can be the reason a police officer beats, chokes or shoots me, that feels a lot like living under occupation. Intimidation via the threat of death. I never feel truly safe. The only adjustment I've made is how often I look over my shoulder to ensure I'm a safe distance from encountering any authority figure carrying a gun.

TPGA: Can you be incredibly frank with our readers about why being both disabled and a person of color puts a body at higher risk of a dangerous police encounter than being only in one category or the other? I am thinking of specific, horrifying recent incidents like the shootings of Keith Lamont Scott, and Alfred Olango.

MB: Right. Specifically in cases like those of Mr. Scott and Mr. Olango, Black men, again, in general, have endured a multi-century campaign of discrimination, mischaracterization, defamation and dehumanization. It's easy to destroy, discard, or even kill something not seen as having any societal value worth saving or caring about.

This is the risk Black men and other POC live with everyday. Add to this fact that the two aforementioned men were battling mental or emotional issues, Mr. Scott's brought on by an accident and Mr. Olango's less defined, the chances of them living through their encounters with police were slim to none.

TPGA: Why do you think discussions about autism and from autistic activists needs to be cleaner and simpler than they generally have been? What are some examples of the kind of communication you'd like to see?

MB: Too often discussions about autism or autistic people are muddied when people confuse co-occurring issues with being autistic. What do I mean? I have OCD, or Obsessive Compulsive Disorder (think Howie Mandel). But OCD is not part of my autism.

By being clear about what autism is and what it isn't, we can keep discussions about autism or autistic accurate, as well as allowing people to get unvarnished stories directly from us. No political or partisan tangents. I believe this clarity will have a more powerful impact on those who aren't autistic, and hopefully lead to increased empathy for us and our challenges.

TPGA: Do you have any specific messages of reassurance or advice for today's younger Black and POC autistics?

MB: If you can, get evaluated. Yes, many Black and POC communities are still in the dark ages in terms of their attitude about neurological conditions. The stigma is widely known. Just know you're not broken or flawed. You're unique. You may even have special neurological wiring giving you an edge over your non-autistic contemporaries. Embrace it. Work with it. See it as an amazing thing. Feel free to connect with other seasoned (but positive) autistic adults as mentors. Remain hopeful. Focus on accomplishing the thing that will allow you the freedom to care for yourself and help others. Avoid using it as an excuse when you fail for other reasons, or, as something to exploit. Love yourself and others will be attracted to that.

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Study Shows that Puzzle Pieces Evoke Negativity from the Public

Morton Ann Gernsbacher
www.gernsbacherlab.org

[Image: Melanie Yergeau, a white person who presents as a 

woman with shoulder-length blond hair, holding a sign

that has a puzzle piece image with a red slash through it

and the wording, “People not puzzles.”] 

Why was the study conducted?

They’re everywhere. On the lapels of NCAA basketball coaches during the Final Four. On a FOX reporter’s bowtieduring the World Series. On bumper stickers, backpacks, bracelets, beer koozies, tote bags, and the background of a prime-time soap opera.

They are puzzle pieces intended to represent autism (and autistic people).

Symbolizing autism with a puzzle piece began with the UK’s National Autistic Society:

"… designed by a [non-autistic] parent … It first appeared on our stationary and then on our newsletter in April 1963. Our Society was the first autistic society in the world, and our puzzle piece has … been adopted by all the autistic societies which have followed."

The puzzle piece was chosen, as Helen Green Allison later related, "because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not 'fit in'."

Evoking negativity was, therefore, the primary motivation for using puzzle pieces to symbolize autism. In current day, many autistic and non-autistic people (e.g., Kabie Brook, Judy Endow, Ruti Regan, Alyssa Hillary, C. S. Wyatt, Ed Ised, Autistic Alex, Dan Edmunds, Melanie Yergeau, Adam Thometz, Tim Turner) argue that puzzle pieces continue to evoke negativity.

However, other people have suggested that puzzle pieces instead evoke positivity or that the “positives … outweigh the negatives.” Therefore, in a recent study (full manuscript here and data/stimuli here) Bev Harp, Jilana Boston, Jennifer Stevenson, Adam Raimond, and I empirically investigated whether puzzle pieces evoke negativity or positivity in the general public.

How was the study conducted?

With a sample of 400 members of the general public, we measured both their explicit biases and their implicit biases toward puzzle pieces in general and autism puzzle piece logos in particular. A bit over half our sample identified as men, a bit under half identified as women, and around 1% identified outside the gender binary. Almost all participants had lived in the United States for the past five years, and they ranged in age from 20 to 75. About 0.5% identified as having an autism spectrum diagnosis; 3% identified as working with autistic persons; 12% as being a friend of an autistic person; and 15% as having an autistic relative.

We administered an implicit associations task, which is a speeded categorization task for measuring implicit attitudes (including attitudes toward images of brands).Participants rapidly categorized images of puzzle pieces and non-puzzle piece shapes. On test trials, the puzzle pieces and shapes were paired with either negative words (such as grief or agony) or positive words (such as cheer or paradise). Categorizing puzzle pieces faster than shapes when they were paired with negative words indicated greater implicit negativity.

[Image: Pair of example generic stimuli from the study. The first image of the pair
 comprises a golden tone puzzle piece with the words SHAPE and POSITIVE
in the upper lefthand corner and the words PUZZLE and NEGATIVE
in the upper righthand corner. The second image comprises a golden tone circle
with the words SHAPE and POSITIVE in the upper lefthand corner
 and the words PUZZLE and NEGATIVE in the upper righthand corner.]

[Image: Pair of example logo stimuli from the study.
The first image of the pair comprises a green puzzle piece with red and gold borders
and the word “Autism” superimposed on it, with the words SHAPE and POSITIVE
 in the upper lefthand corner and the words PUZZLE and NEGATIVE
in the upper righthand corner. The second image of the pair comprises a green circle
with red and gold borders with the word “Autism” superimposed on it,
with the words SHAPE and POSITIVE in the upper lefthand corner
and the words PUZZLE and NEGATIVE in the upper righthand corner.]

We also administered an explicit associations task, which is a standard task for assessing explicit attitudes toward brands. Without any time-pressure, participants completed the two sentences: “When I see a puzzle piece, the first few thoughts that come to my mind are ____” and “When I see a shape, the first few thoughts that come to my mind are ____.” Participants were asked to list five associations for puzzle pieces and five associations for shapes, and their associations were later sorted into mutually exclusive categories (e.g., negative associations, such as “problem,” “bad,” and “sad,” or positive associations, such as “fun,” “happy,” and “good”).

What were the study’s results?

The study’s results demonstrated that puzzle pieces evoke negativity from the public—both implicit negativity and explicit negativity. During the implicit associations task, participants categorized puzzle pieces significantly faster than they categorized shapes when the puzzle pieces or shapes were paired with negative words (t(399)=-7.661, p<.001).

A standardized metric known as the Implicit Association Test score also demonstrated that participants’ implicit bias against puzzle pieces, both generic puzzle pieces and those used as autism logos was significantly negative (t(399)=-5.357, p<.001).

During the explicit associations task, participants provided considerably more negative explicit associations to puzzle pieces than to shapes (z=4.693, p<.001, d=0.491). In fact, half the participants’ negative versus positive explicit associations to puzzle pieces were negative (in contrast, only a third of their explicit associations to shapes were negative).

Participants explicitly associated puzzle pieces, even generic puzzle pieces, with incompleteness, imperfection, and oddity.

What policies do the results suggest?

This study’s results suggest that if an organization wants to evoke negativity from the public, using puzzle pieces is the way to go. Puzzle pieces evoke negativity. However, if an organization wants to evoke positivity about autism, puzzle-piece imagery is probably not the way to go.   

As autistic author, artist, and international speaker, Judy Endow, MSW, has concluded, because “of the negative message about autism the general public now associates with the puzzle piece, any positive programming on behalf of supporting autistics is undermined by use of the puzzle piece logo.”

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