Category: Controversies

People, Not Puzzles

9/5/2014

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, Too": My Autism Speaks Story

7/18/2014

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Almost everyone in the autism community has an Autism Speaks story. It may be positive ("I raise money for them!") or it may be negative ("Autism Speaks? You mean Autism $peaks."), but it is very rarely neutral. I’ve told snippets before, but here’s the entirety of mine.

When I was in high school, I was talking to a classmate about autism. I said my sister had it and was trying to cobble together an explanation of autism, even though I had little understanding of it. “We should do an autism fundraiser!” she said. I said, “Well, there’s an organization we could raise money for, Autism Speaks.” In a flurry of excitement, we ran all around the school that day, getting permission from administrators and teachers to host a Walk A Thon on our campus.

Though Caley was the inspiration for the fundraiser, I never asked her opinion about it, assuming she’d be all in favor of an organization devoted to helping her, nor did I involve her in it. Ultimately, between my fellow student and me (she got the project rolling and I took care of the day-of planning) we actually pulled off our plan, a minor miracle in of itself, and raised over $500 to donate to Autism Speaks, much to our mutual, extremely pleasant surprise.

Now, fast forward a year. I was hanging out on Facebook, like most college kids (and, these days, adults), do, chatting with a friend I hadn’t seen in years. In conversation, he mentioned to me that he was later diagnosed as being on the autism spectrum. I, still proud of my past accomplishment, excitedly messaged him that I’d raised money for Autism Speaks. I don’t remember his exact response, but it was something along the lines of him saying, “I really wish you wouldn’t have.”

I don’t remember what that moment was like, but I’m sure it was one of shock. Why would an autistic person not want me to raise money for an organization devoted to helping them? I questioned him, trying to get to the bottom of this paradox. And he told me. He told me how Autism Speaks didn’t actually have any autistic people on its board, and how Autism Speaks didn’t speak for autistic people. Their agenda, in fact, was quite the opposite of that of most autistic people, he said.

I’m going to be honest. I didn’t believe him at first. So I did what anyone in my shoes would do – I turned to Google. And there waiting for me, where I had never thought to look because of COURSE an organization focused around autistic people would have the same goals as them, was article after article, post after post, of damning proof. You can do the same search yourself right now – in the years that have passed, more and more articles have joined the ones that convinced me.

And finally, I turned to the person whose opinion on the matter was the most important in the world to me. I turned to Caley. I asked, “Caley, what do you think about Autism Speaks?”

This video was her response. When you watch it, imagine her or the autistic person you know watching it. Imagine their perspective. Imagine how Caley felt when, as she told me she did, she Googled autism and divorce as a child after our parents divorced, looking for advice on how to help her cope with the divorce as an autistic person, and instead found this. https://www.youtube.com/watch?v=8mycxSJ3-_Q

She sobbed for hours, having been told that she was the source of all our parent’s woes – including the very divorce she’d been seeking help for.

This backlash against this video, blessedly, was huge, to the point that it inspired parodies by the autistic community (https://www.youtube.com/watch?v=yU2paLv1MGE) and outrage from many allies. Ultimately, Autism Speaks withdrew the advertisement. They never, however, publicly apologized.

And it doesn’t end here. The list of the hurtful and harmful things Autism Speaks has done just goes on and on:

- They supported the Judge Rotenberg Center, a place where the electric shock “therapy” for its autistic students (read: torture) is so bad that the United Nations called for an investigation. http://www.autistichoya.com/2013/11/an-unholy-alliance-autism-speaks-and.html

- They have no autistic people on their board, and even when they had an autistic person briefly working alongside them, Autism Speaks leaders did not listen to his words, and as a result he resigned. How can they speak for autistic people when they don’t even listen to their voices?
http://www.disabilityscoop.com/2013/11/14/noted-cuts-ties-autism-speaks/18893/

- They only give 4% of their funds to services for autistic people, and a mere 1% of their money goes to research benefiting autistic adults. To give perspective, 5% of their funds go towards salaries and administrative costs. As a result, many autistic people refer to them as “Autism $peaks”. https://autisticadvocacy.org/wp-content/uploads/2012/05/Autism_Speaks_Flyer.pdf

- They intimidated a 14 year old autistic girl who had dared to make a parody site about them (NTSpeak). http://autism.about.com/b/2008/01/22/when-is-a-humorous-site-not-so-funny-autism-speaks-has-its-say.htm

- A lot of their funding for research goes towards prenatal autism testing. This is research to take us down a road of eliminating autism, not even for those of you who are pro-cure, for the people who are here, but simply through abortion (as has already happened with Down’s syndrome). Autistic people see this as the road to eugenics, and I’d have to agree. https://www.youtube.com/watch?v=ez936r2F35U

- They vilify and demonize autism and autistic people in their campaigns. The more recent instance of that was in the “Call to Action” that their leader, Suzanne Wright, put out, in which she compares autistic children to having been kidnapped, characterizes them basically as vegetables and their families as not living. http://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle

There’s more where that came from - enough to fill an entire website devoted to bringing to light these many wrongs (http://boycottautismspeaks.com/why-boycott-1.html).

As you can imagine, no, Caley does not support Autism Speaks.

If you’re reading this in shock, know that I had the same reaction when I first learned. It had been inconceivable to me that an organization’s goals could be so very opposite of those they claimed to represent. Once I realized the reality, however, I could no longer support them, and was horrified that I’d donated money to them in the first place.

And, that, is why I called this post “I, too.” Because I am not the only one who had this experience. We all have these stories, which start off with initial support (and even fundraising), followed by shock and disbelief, then a battle to square the organization you thought you knew and that which exists, and ultimately, a renouncement of the organization. And I know some of you reading are penning your stories at this very moment, having learned for the first time that Autism Speaks does not speak for autistic people. To those of you who fall into that category, I’m sorry. Yes, I wrote this to educate you, but particularly for those of you who, like me, were active fundraisers, to have heard that the very act that we intended to help the autistic people we care about actually, in fact, hurts them – well, it can be hard news to take.

The good news is, you’re not alone. Even the most respected voices in the autism community have been there, like John Elder Robison, author of Look Me in the Eye, and Jess at Diary of a Mom. The better news is, just because Autism Speaks is not a good organization to support, that doesn’t mean you can support autism organizations anymore. There are some wonderful pro-autistic people organizations out there, like the Autistic Self Advocacy Network (http://autisticadvocacy.org/), the Golden Hat Foundation (http://www.goldenhatfoundation.org/), and many, many more.

I asked Caley what she’d want people reading this to do with this newfound knowledge of the harm Autism Speaks causes autistic people. She had this to say:

“It would be really appreciated if you helped spread the news, so less people had to go through supporting Autism Speaks and then later learning about what they do. And also, obviously, if you support them, PLEASE stop.”

Now you’ve heard her. You’ve heard the autistic community. And you’ve heard me, a person who was once sitting in the same position as many of you are now. Autism Speaks may not speak for autistic people, but autistic people are speaking for themselves loud and clear. Will you listen?

-Creigh

Image is of me, Creigh, at the high school fundraiser I hosted for Autism Speaks. I'm standing in front of the bleachers, sleeves rolled up and sunglasses on, looking proud of myself. I'm wearing a blue "Autism Awareness Day" t-shirt, with the Autism Speaks logo prominently emblazoned on it. If only I could go back in time and tell that me what I know now...

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On Autism, Gut Problems, and the Gluten Free Diet

6/1/2014

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I almost didn't post this. The potential to offend people was too high, and I am most definitely not an authority on the subject. But I thought about it and came to the conclusion that I have a whole lot more background in research and statistics and science than many, by virtue of my psychology degree, and was in a position to help others understand where research as to the gluten free diet currently stands. This is not an exhaustive post, it's merely intended to serve as a caution to those familiar with the diet, but not the research and introductory information for those

If you're not aware, the gluten free diet is THE diet in the autism community. Those who believe in the diet believe in its benefits (claims can range anywhere from help with stomach problems, to a cure for autism) with an almost religious fervor. Given that fervor, talking about it is like talking about vaccines - it's a very dangerous thing for me to come out and discuss, because I will inevitably offend people. If you are one of those people, please know that is not my intention, nor is it a reflection of my respect for you or your decision. I write merely to spread information.

Discussing the gluten free diet is difficult for me, because I admit, I don't have a full understanding of all the literature. I have read quite a few studies (straight from the source, not merely blog articles that pick and choose and twist studies merely to support their points), mind you, but I am not an expert in the area. It is even more difficult for me to write here, because it's hard for me to address all the claims made about the gluten free diet, since they are so numerous. So instead, I'll break it down into the four most common claims, and then go into the reasoning/research behind the scenes.

1. Does a gluten free diet cure autism?
No. At this point in time there is no cure for autism.

2. Does gluten cause autism?
No. I'm sure I could go in depth and explain scientific reasons for why it doesn't, but we'll just stick with common sense here. Studies have found symptoms of autism in babies as far back as early infancy - at which point the baby isn't eating anything with gluten.

3. Does the gluten free diet significantly reduce any symptoms of autism?
Maybe, but it's unlikely. Studies disagree here, but the most trustworthy scientific take on this I've found - a Cochrane review - says there's "a lack of evidence to support the use of gluten and/or casein free diet as an effective intervention for persons with autism and also a lack of research on potential harms and disbenefits of such diets." Even without the review, though, between the biases involved and confounding variables, I'm extremely doubtful that there's any causal relationship.

4. Can the gluten free diet help some people with gastrointestinal problems?
Yes. I speak here as someone who is currently on a gluten free diet, as prescribed by my gastroenterologist for gut issues. I can personally attest to it, and there are loads of studies to back this up.

Confounding Variables

Okay, so I mentioned confounding variables in number three as a problem and I may have lost some of you. What is a confounding variable?* Well, in this case we're talking about the third variable problem, which is what happens when an outside variable makes it seem like there might be a causal relationship between two things, when there really isn't. For instance, using statistics, I could make it seem like ice cream causes people to drown. Because, and this is true, as ice cream consumption increases, so do drowning deaths. Does ice cream cause people to drown, though? No, of course not! There's another factor in there - heat. As it gets hotter, people seek relief by eating ice cream...and going swimming. Therefore, while it's true there's a relationship between the two, it isn't causal. There's a third variable, heat, which explains their correlation. This, by the way, is one of the reasons you should always be cautious when you read a headline that declares there's a correlation between ____ and autism, because for reasons such as the third variable problem, correlation does not prove causation.

What is a possible confounding variable in all this autism and gut problems research? Well, the biggest one, which was my automatic thought when I heard about this potential relationship, is anxiety. Anxiety is a highly comorbid problem for autistic people, which is to say that anxiety and autism are related. Anxiety and gut problems are also related. Therefore, you have a potential third variable. Anxiety could be causing these gut problems that we're seeing, as opposed to autism.

Another potential confounding variable is the food restrictions of people on the spectrum. Many are 'picky eaters' who have a very limited diet as a result. A diet inadequate in nutrition can, as Willingham points out, cause the very gut problems that the gluten free diet (for some) seeks to remedy. So, ironically, curtailing someone's diet by eliminating anything with gluten could also be causing harm. For this reason, I highly recommend utilizing a nutritionist if you choose to try the gluten free diet.

Yet another variable, which could help explain the occasional (still not as large as it has been painted) change in some symptoms in some autistic people, but not in all** that some (but again, not all) studies have found is gastrointestinal in nature. After all, if you're in pain and having gastro trouble, and then all of a sudden that pain/discomfort goes away, it's pretty common sense that your behavior is going to improve as well. Teasing out the difference between the two effects is something we have to be careful to do.

Why is it important whether or not gluten causes the dietary issues? Well, we could be focusing on this at the wrong angle. If, as I suspect, anxiety is the culprit, we could be focusing our attention on interventions to help combat it directly, while preserving dietary variety, which, as I said, is particularly important for picky eaters. Caley swears by anxiety medication for herself, but says we should be focusing even more on teaching people with anxiety techniques to help them cope...which we don't do. If battling anxiety were embraced with the same fervor as the gluten free diet has been, I feel quite certain that autistic people (and their guts) would be better off.

Now, I am not a scientist. I have pretty extensive training in statistics and a fair amount in research methods, which is why I feel more comfortable interpreting these studies than most, but I am definitely not a professional in the field. (Willingham, however, is.) I also have not done as much in-depth research into this issue as I would like and cannot say anything with certainty. The gluten free diet may well work to alleviate certain symptoms of autism, though again, given the weakness of the evidence at the moment, I am doubtful.*** I am fairly confident that it can help with gut problems that many autistic people have, but whether or not it helps on the net, when you factor in potential inadequate nutrition, or whether it helps more than targeting anxiety, I cannot say.

One thing, however, I am absolutely confident about. The gluten free diet is not the miracle 'cure' for autism or even for certain symptoms that it's been painted to be, and if I had an autistic child without obvious gastrointestinal issues, given current evidence, I would not be putting them on this diet.

-Creigh

*I'm simplifying my explanation to the extreme here, so those of you scientists/statisticians, go easy on me.
**Note how many qualifiers I included here. Occasional (as in, not all studies found these changes - I haven't examined the study construction in depth so I can't say if that might have something to do with the discrepancies), subset (as in, only a small sub group of people studied showed any such potential changes), and only some of the symptoms changed and not by huge amounts (as in, it's not a fix for those symptoms).
***I am speaking to the perspective of parents of autistic children who would put them on the GF diet, here. Myself and Caley don't see it as symptoms separate from the person, merely characteristics that autistic people often share, and we don't see them as the problem others do.

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What We Hold Sacred

10/13/2013

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When I was younger, my father used to tell me, "Creigh, everyone has their own sacred cows." Being quite literal, I thought he was referring to actual cows for the longest time. Later I realized that he was referring to beliefs that people hold sacred and above reproach or question.* I hadn't even thought about that concept, much less the phrase, since then, until one day recently when I realized it perfectly describes discussions of autism.

I have been so careful in this website trying to avoid discussing topics of controversy, except in the most cautiously impartial sense representing both sides - and not indicating which I supported. This should not be seen as indicative of my own beliefs about autism. Actually, I have quite strong beliefs on the almost all the controversial subjects of the autism world, including treatments, cures, causes, and more. Why did I attempt to filter all but the least controversial of those beliefs out of the website? Out of fear.

My fear is that as soon as I say something in contradiction of a belief someone holds sacred (and you basically can't express an opinion either way on a subject without doing so) they'll write off the entire website. To use vaccines as an example, no matter if I came out as pro vaccine or as anti vaccine, there's a whole group of people that I would risk alienating. Because as soon as you disagree with someone on one of those 'sacred' subjects, it's almost like metaphorical walls go up in another person, and all your other words are tainted by that one disagreement.

That is the peak of foolishness. We can all learn from each other when it comes to autism. Even someone who believed exposure to rainbows caused autism (to use an example I'm sure will offend no one) might still have great insight into sensory issues, or a great idea for managing meltdowns or navigating the school system.

I guess what I'm saying is, we shouldn't write off someone's ideas just because they say something different from what we believe.** Who knows - they might have a point. Moreover, even if they were wrong about that one concept, it doesn't mean that they don't have other things of value to say.

So please, don't write off everything I say just because I have different beliefs from you (and I most likely do). As people who care about those with autism, whether we personally are autistic or love someone who is, we should stand together, not apart.

*And still later I realized that was probably not a terribly politically correct idiom.

**Although you should definitely check the evidence before believing them.

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