Tuesday, September 19, 2017

Autism Information That Will Help You

TPGA editorial and support crew
[image: Selfie of red-headed white woman
and her handsome autistic teen son.]
Welcome! Our team created Thinking Person's Guide to Autism (TPGA) to be the autism guide that didn't exist when our autistic kids were first diagnosed. You can rely on this website, our vibrant Facebook community, our Twitter feed, and our book for evidence-based, compassionate, and useful information and discussions from autistic people themselves, parents, and professionals.

Here are some of the TPGA basics, if you're new here. But please explore the hundreds of posts on our site, and our extensive Resources section, if what you're looking for isn't directly below.

-Shannon Des Roches Rosa
TPGA Senior Editor




New Autism Diagnoses

Understanding Autism

Evaluating Autism Information

Monday, September 18, 2017

Don't Let Congress Dismantle the ADA: How You Can Take Action

Maxfield Sparrow
unstrangemind.com

Trumpcare Protest At The U.S. Capitol 2
Photo © Stephen Melkisethian | Flickr/Creative Commons
[image: Black-and-white photo of disability rights protesters
at the U.S. Capitol: some using wheelchairs, some not.]
We educated our legislators. We wrote letters and made phone calls. We worked hard to get the message across, yet the House judiciary committee has chosen to take the next step to dismantle the Americans With Disabilities Act (ADA): H.R. 620 will go in front of the entire House of Representatives for a vote. We have no idea yet when that vote will be, so we need to renew our efforts to educate and persuade our lawmakers, so they will act to protect the ADA, and reject H.R. 620 and its agenda to confuse and limit the ADA.

As I wrote back in May, “Unless we educate our legislators about the harm of notification bills like H.R. 620 and similar state-level legislation, the ADA Title III regulations that protect us from discrimination and access barriers will are bound to become encumbered with unjust obstacles.”

H.R. 620, the ADA Education and Reform Act of 2017, will weaken the ADA and have a strong negative impact on the lives of disabled people and our access to services, businesses, and full integration in the communities in which we live. The Autistic Self Advocacy Network has helpfully provided a script for disabled people to use when contacting Congresspeople about H.R. 620:
“My name is [Name], and I live in [your town]. I’m [calling/writing] to ask Representative [Name] to vote NO on H.R. 620. People with disabilities need to be able to shop for groceries, stay at hotels, and use other public accommodations. It has been 27 years since the Americans with Disabilities Act. Disabled people in our district have waited too long for access—and businesses have had plenty of time to provide it. Please protect the ADA and vote NO on H.R. 620.”
Whether you use the script or tell Representatives in your own words, it is crucial that we all make our voices heard now, as quickly and as emphatically as possible. Disabled rights are human rights, and that means that everyone’s rights are in danger right now. We cannot let this attempt to roll back human rights legislation go unchecked. It’s time to pick up your phone, your TTY, your keyboard, or whatever communication device will allow you to make your opinion known to your Representatives.

If you don’t know whose jurisdiction you live in, check Contacting Congress, a web directory of Senators and Representatives in the U.S. federal government. If you can’t get your voice heard through the usual channels, ask your friends, family, support staff, or disability rights organization to help you get the message through. So many of us depend on a solid ADA to protect our education, our participation in the community, and our beautiful and valuable lives.

The time to act is now! We must protect the ADA and the rights of disabled people in the United States. Tell your Representatives that a vote against H.R. 620 is a vote for the lives of scores of millions of disabled Americans.

Sunday, September 17, 2017

What Makes Institutions Bad

Mel Baggs
ballastexistenz.wordpress.com

Buffalo State Hospital
Buffalo State Hospital, closed in 1974. Photo © Shannon O'Toole
[image: A dilapidated interior hallway of a former state hospital.]

Most people don’t have the foggiest clue what’s bad about institutions. What’s bad is something you pretty much never hear about, which is the violence it does to people’s insides at a very deep level. And that can’t be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.

Please, please, please everyone who talks about this in the past tense—STOP. This is still going on. Everywhere.

I think too many people get the wrong kind of idea. They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things—the belief in those things—are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house—and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything—everything—that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception—a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant—even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD (developmentally disabled) people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there—she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression—this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage—what it is, what it means, where it comes from—you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization.” That’s where you live with your parents but you spend most of the day being driven between various places—segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free.” I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me—because of my particular history—I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.

----

(I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it.)

Monday, September 11, 2017

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.

Thursday, September 7, 2017

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 bowtie during 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.”

Tuesday, September 5, 2017

Encountering the Limits of My Professional Autism "Expertise"

Anonymous

Photo © Carissa Rogers | Flickr/Creative Commons
[image: Adult and two children, silhouetted against
a lake and colorful pink sunset.]
I started working with autistic children in the mid-nineties, as a volunteer in a magnet school. The experience was influential, and I went on to become a psychologist, getting a PhD focused on autism research. Since then I’ve been working in academia for almost a decade, and have published numerous papers reporting on novel autism studies. I’ve built a reputation in my sub-field within autism research and am, I’d like to think, fairly well-regarded professionally. All of this was established well before I had children.

Earlier this year, following about a 12-month process plus a longer period of discussion between myself and my partner, my daughter Penny was diagnosed with autism.

In many ways nothing has changed—Penny is still Penny, my work is my work. In other ways, of course, things are different. The "official" designation of autism for Penny means I am now a "stakeholder" in my own research field, as are the rest of the family. And I have had to experience systems I thought I knew well—such as the diagnostic pathway—from the flipside.

I am by no means the first academic to have a family connection to autism, but I suspect it is more common for a researcher to move into autism studies following the diagnosis of a family member. In fact, I can think of many examples where this is the case, and know of few others like mine – where the professional interest predates the personal connection.

I pride myself on being engaged with the autistic and autism communities. Nevertheless, the official arrival of autism in my family has left me with no doubt as to the limits of my supposed expertise, as in some situations my training and information has been of no use whatsoever. I hope the professional/personal gap examples below may empower parents to know that the ‘professionals’ don’t have all the answers, and also inspire professionals to do what they can to address such challenges.

How to talk about autism with my other child 

My autistic daughter has a six-year-old little brother, Hank. They have a tumultuous relationship, to say the least. When Penny is exhausted from a school day, having worked her butt off to meet everyone’s expectations of her, it is important that she does not have to meet similar expectations in our house. This is her home, and she must be able to relax here.

But what about when her preferred form of relaxation impinges on Hank? What about when Penny wants to commandeer their shared bedroom as her quiet space? What about when her repeated humming of the same phrase drives him round the bend? What about when he is given a new fleece sweater and she seizes it because it is So. Perfectly. Soft?

It is a constant struggle, even as an adult, this working out how to tread the line between supporting Penny’s needs, and also asking her to be reasonable and fair as a family member. Helping a six year old work out how to achieve this balance too?—virtually impossible.

How to ensure my daughter feels loved

My daughter is not a fan of kisses and cuddles. If she is watching a favorite TV show or playing a game, she doesn’t especially want my company—and many times she has asked me to leave her alone. Yet my son loves physical affection. I am not sure what Penny makes of it when she sees me smothering him with kisses, or giving him “just one more hug” before bed.

It troubles me greatly that I am not sure how to express my love for her. Though she and I share few interests, I do know how to make her happy—my husband and I shower her with new facts about the things which interest her, we appreciatively watch her home-made puppet shows and applaud them with unfeigned enthusiasm, we take her to the trampoline center whenever we can. But while these are all obviously the actions of a loving parent, I don’t know whether they make her aware of our love, in the same way that the traditional markers of affection so obviously do for Hank. Although it is her choice, does she feel left out of a key part of family life?

How to talk about friendship

One of the major factors that prompted us to seek a diagnosis for Penny, apart from her telling me explicitly that she knew she was different from other kids, was her difficulty making friends. Or rather keeping friends—she makes a new friend incredibly easily. She is open and gregarious, and will readily introduce herself to children her age at the beach, or on the playground. But her friendships with children she sees regularly—at school for example—are very up and down. Penny is extremely pre-occupied with trying to manage these friendships, often trying to create a gang or club in what I interpret as an effort to codify and organize her friendships into something more reliable and predictable. Needless to say, this doesn’t usually work!

My partner and I do not want to "teach" Penny how to make friends—I’m not sure this is a talent which can be taught, and I won’t consider putting Penny in any program, however well meant, that is more likely to undermine her self-esteem than develop useful skills. This leaves us with three options as far as I can see, all somewhat unappealing:

One is to tell her that this melodrama is a normal part of friendship. Accurate perhaps—I can’t really tell whether there’s anything different in her experience of friendship than that of any other girl her age; maybe she just takes it harder, or dwells on it more?—but of limited practical use.

Another option is to help her understand that her struggles with friendship are not her fault—again true, but I don’t relish suggesting that her classmates are incapable of "getting" her. I hope it isn’t true, but even if it is, I don’t see how this would make things more positive.

The third option is to simply reassure her that it is OK to only have a few friends. I feel pretty strongly about this one—if there’s anything new I’ve noticed since Penny got her diagnosis, it is that society does not endorse the option of growing up and just not having a lot of friends. Every adult asks a child, by default, about their friends. In every story, a happy ending involves a gang of friends, or a marriage. Popularity is an entirely unquestioned marker of happiness. Where are the role models for those who are happy being alone? For this reason, we’ve agreed that my partner, who has very few close friends and is perfectly happy that way, should try to talk more about this, so that Penny can see that building a big gang of friends is not a prerequisite for living a good life.

How to manage my personal connection with autism in the workplace

This blog is being written anonymously for good reason: While I value and respect the many insightful accounts shared by parents, I’ve decided that I shouldn’t share my daughter’s information online before she can make that informed choice herself. In particular, because I am often speaking about autism at public and academic events, it is important to me that Penny doesn’t become a default part of that.

On the other hand, I work with a lot of people who are also my friends, and I want them to know about what’s going on in my family. Even beyond my immediate group of colleagues-who-are-also-buddies, there are people who maybe ought to know. I’ve had to sit awkwardly in dozens of meetings since my husband and I both decided that Penny was probably autistic, and bite my tongue as people speak as if the only connection any of us has to autism is a professional interest. In one particularly tough meeting, I had to endure someone describing autism as “an unfortunately incurable disease.” I’ve no doubt he would never have dared use such language if he had known I had an autistic daughter, but challenging him would mean outing her, which I didn’t want to do.

I’ve always argued that there should be no difference in the language we use to talk about autism in the absence of autistic people versus in their presence (or in my case, in the presence of a family member). Sadly, I have become profoundly aware that this is not the case.

"Expertise" does count for something…

There have been many times over the past year or two when I have been grateful for my professional knowledge. I understand the diagnostic process, and while it was painful to have to repeatedly emphasize my daughter’s difficulties, I knew what to expect at each stage and I’m sure experienced far less stress than many parents.

I have read with interest the growing literature on the profile of autism in girls, which gave me the confidence to seek a diagnosis and allowed me to find good resources (like this excellent booklet) to share with the school and wider family. I can make informed choices, with Penny, about what supports might or might not be helpful for her.

The “everyone’s a little bit autistic” and “but she can’t be autistic, she is doing so well!” reactions from some family members were upsetting,  but being prepared for them softened the blow. Most importantly, perhaps, our familiarity with autism meant that neither my partner nor I felt any distress during the process or at the point of diagnosis.

We hope that her autism label will allow Penny to embrace and own her identity, but also that she won’t let others use it to limit her, or her opportunities. The great strides being made by the autistic community make me optimistic that her future, and that of her community, is full of hope and opportunity. I’m excited to see what she will achieve in her life, and I hope that, expert or not, I will find the right way to support her.

Thursday, August 31, 2017

Autism: What ERs and Hospitals Need To Know

heart examination
Photo © ILO | Flickr/Creative Commons
[image: Doctor giving a heart exam to a patient on a
hospital bed. Both people are East Asian.]
I am a professional disability advocate in my mid-thirties. I am also autistic and have various learning disabilities/mental health diagnoses. I have always been very lucky in that I live in a state that gives me good access to healthcare, despite the fact that I am very low income.

I was a personal care aide for many years, and due to this I developed back problems. In the spring of 2016, they became significantly worse. I tried many, many therapies and medications. I was eventually diagnosed with an extruded disc, and had surgery in January, 2017.

Although my surgery was supposed to be routine, and all of my health care practitioners knew in advance about my unique neurology, it quickly turned into a bad situation: I reacted very violently to the anesthesia, then had an allergic reaction to the opioid painkillers (which did not work otherwise). I ended up having two ambulance rides, two emergency room (ER) visits, and an overnight hospital stay over the course of 72 hours. None of this was pleasant—I would even say it was hellish at the time—but I also ran a 103 fever for unknown reasons, and so spent part of the experience hallucinating.

Why Hospitals And ERs Need Better Guidelines For Treating Autistic Patients

I would like to make clear that I am very grateful for the care that I received at the hospital, and I understand that the doctors and medical personnel were acting in my best interest while also running a busy city ER. However, as an advocate, I would also like to ensure that what happened to me never happens to another autistic person.

The majority of online materials I have been able to find on healthcare and ER visits by autistic people assumes that 1) The autistic person is a mental health crisis and 2) that they are not their own guardians. These materials are also rarely written by actually autistic people. We need better materials.

I am therefore writing these guidelines so that when my neurodivergent friends and I break our ankles, wrench our backs, cut the ends of our fingers off, or have an asthma attack or a seizure, we can know that we are being seen by people who are making a sincere effort to understand how our unique neurology affects our ER and hospital experiences.

Introduction

Autism is a neurodevelopmental condition which often bring communication difficulties, sensory processing problems, and executive functioning deficits. In addition, even the most intelligent, talkative autistic person may lose their ability to speak or communicate clearly when they are in distress.

Autistic people come to the ER for the same reasons as any other patients—they are sick, and they need immediate assistance. But because ERs are strange, confusing, often hellish places, autistic people of all abilities may behave unpredictably and even violently when brought to the ER. Autistic people who have more intense communication support needs, especially, may not be informed why they are there, nor what is going to happen to them, and may therefore get restrained for routine procedures.

It is likely that higher-support autistic people will come to the ER with family or staff members, especially if they are not their own guardians or medical decision-makers. Be sure to talk with caregivers about preferred communication strategies, so the autistic patient can cooperate with the medical care they need, to the best of their abilities.

Establishing reliable communication is important, since just because it seems that an autistic person may not seem to understand something does not mean they do not. Never assume anything about an autistic person's behavior, except that they are doing the best they can in circumstances beyond their control. Some autistic people may be unable to stop their bodies from behaving in violent, unpredictable ways, even though their minds are telling them to stop. Some people who use communication devices may lose their ability to do so in a crisis because their bodies are so overwhelmed.

Communicating with Autistic People in ERs or Hospitals

Three Autism-Specific Communication Terms to Know:
  1. Echolalia is when someone echoes something they, you, or someone else has said.  
  2. Stimming is strong emotions or other feelings or urges resulting in physically repetitive movements, often for happy, coping, or self-soothing reasons. 
  3. Scripting is when a person repeats or quotes from a source such as a television show, to express themselves when they cannot access the words they need, or for pre-prepared responses.
Best Practices for Communicating With Autistic Patients: 
  • Speak directly to the autistic person, even if they have a helper or family member with them.
  • Do not ask, ‘How are you?’ This is an absurd question, because if someone is in the hospital it is because they are not well. Instead, ask concrete questions, such as, ‘What hurts?’ or ‘Why did you come to the ER instead of waiting for your PCP/the clinic to open?’ or ‘Are you having trouble breathing?’ or ‘Do you feel like you are going to throw up?’
  • Speak slowly, in clear sentences, and give the person plenty of time to respond.
  • Do not expect eye contact. It is both unnecessary, and uncomfortable-to-impossible for many autistic people.
  • Exude calmness. Autistic people can and will pick up—and echo back to you—your bad mood or anxiety. Even if you’re a busy ER doctor at a city hospital, try to reassure your autistic patient that it is good that they came in.
  • Do not expect autistic patients to understand the smiley-face-sad-face pain chart. (That chart makes no sense to many of us). Instead, make it an option to ask about pain on a numbered scale.
  • Ask questions multiple times, in multiple ways. Often autistic people will simply echo what is most recently said. If you ask, ‘Does your ear or your throat hurt?’ they may reply, ‘Your throat hurt,’ when what they meant to say is that their nose hurts. Similarly, if you say, ‘is this happening, yes or no’ they might say ‘or no’ because finding words to communicate with is hard and it’s much easier to just echo what was said.
  • Try not to use metaphors when talking. Be very literal, and expect the autistic person to be equally literal. (Plenty of autistic people of all abilities are sarcastic and witty, with a dark sense of humor; this is just not likely to show up in a place like the ER because they are under so much stress.)
  • Don’t use dolls or other apparatus. Most autistic people know perfectly well that the doll is not in pain, and may wonder why you are asking them to point to where it hurts on the doll. The doll is plastic. Who are you to work in a hospital, if you think a doll can feel pain?
  • Autistic people can have a very low tolerance for absurdity. I honestly thought that the nurses were forgetful or inept when they kept asking me my name and birthday. Wasn’t it right there on the chart? Explain why you need to check.
  • Explain exactly what you are doing before you do it, and why, and what sensations they might experience.
  • Pronouns can easily be lost in a crisis. If the autistic person is speaking in the third person or referring to themselves as "you," simply try to adjust and follow their language accordingly, or look to any caregivers for support.
  • If you touch a body part, then ask ‘does this hurt when I touch it,’ autistic people may say no, since you stopped touching that part. It doesn’t hurt them at all when you touch the air! Instead, place your hand, preferably firmly, and ask, ‘does this hurt now?’
  • Do not discourage stimming as a coping mechanism, unless your autistic patient is physically hurting themselves or others
  • If a person is scripting, ask their caregiver to try and figure out where the script is coming from and what it means. For example, they might be quoting a favorite character who is in a lot of pain to indicate that they themselves are in pain, or echoing a character who is fed up with things to say that they are fed up and want to go home.
  • Offer a whiteboard or notebook/pen to communicate more easily, as an option (this will not work for everyone).
  • If you have time, and the person is not in extreme distress, ask the autistic person what they are passionate about. This is an straightforward way to help your autistic patient be more at ease with you. Show as much enthusiasm for the topic as you can genuinely muster: If you do not like trains, there is something wrong with you, (sarcasm), so just like trains already.
A Final Reminder

If an autistic person is biting themselves, hitting themselves, or engaging in other self-injurious behavior, it means one thing: they are in distress. As lashing out at others is not acceptable, autistic people often turn their behaviors inward and hurt themselves. Your immediate job, above all else, is to do your best to relieve that distress.

----

A version of these guidelines was shared with the ER that treated the author. While thankfully the author has not had to visit the ER since, they are glad they did make a small difference in this small way.

Wednesday, July 12, 2017

Being Homeless Is Even More Complicated When You're Autistic and LGBT

Make yourself at home Castro #lgbt #worldhomelessactionday #ows #occupysf #oo #osf
World Homeless Day in San Francisco's Castro District
Photo © Steve Rhodes

[image: Black banner with white lettering reading, "Make
Yourself At Home" draped from a second-story window,
next to a LGBT Pride flag.]
Kris Guin
queerability.tumblr.com

Homelessness is not discussed as much as it needs to be, especially as it relates to marginalized groups like the LGBTQ and disability communities.

LGBTQ people and people with disabilities are disproportionately impacted by homelessness. 40% of homeless youth identify as LGBTQ, and 40% of people with disabilities are homeless. LGBTQ people and people with disabilities often become homeless because of skyrocketing rent, unsupportive families who have kicked them out of the family home, and discrimination from landlords—among many other reasons.

Some cities are getting better at addressing LGBTQ youth homelessness by funding LGBTQ housing programs, and some people with disabilities may qualify for housing assistance through Housing and Urban Development. However, with all this progress, the housing system still needs a lot of work as many people still experience significant gaps. Some of these gaps are the result of age restrictions, confusing bureaucracy, and long waiting lists.

I was one of those people who experienced gaps in the Washington, DC and Birmingham, Alabama housing systems. I am an autistic transgender man, and my parents kicked me out of the house in late September 2016. While I was in Birmingham, I tried accessing housing services with a local LGBTQ nonprofit, but their services were only for young adults up to age 24 (I was 26).

Because I have an amazing support system, I was able to move to Washington, DC. But there I experienced similar difficulties with the LGBTQ housing system, because I was too old. I was able to piece together four months' worth of housing with friends, though, as an autistic person doing so was exhausting and draining. During those four months, I stayed in nine different friends' apartments and houses, crashed on couches in living rooms and, when I was lucky, in private guest rooms. Then I was able to move into the spare room of an older couple, where I was able to stay for another full four months.

I was very uncomfortable going to traditional homeless shelters in both Birmingham and DC because, despite identifying as a binary trans man, such shelters are often gendered in the binary: If I were to go to a women’s shelter, I might be safer from assault, but I would get misgendered. If I were to go to a men’s shelter, it would be a little more affirming of my gender identity, but I would be vulnerable to assault.

I attempted to get help navigating the government safety net from local nonprofits in DC, such as SNAP, SSI, and housing programs, but they often had prerequisites to receive their full services. One local LGBTQ-affirming nonprofit, Whitman-Walker, required that I become a medical patient with them in order to receive their benefits navigation services. In order to become a medical patient, I needed health insurance. They were able to help me apply for Medicaid, but I still had to wait a month for a new patient appointment. To make matters more difficult for me, their benefits navigation department was walk-in only—and being autistic, I have a hard time going places without a scheduled time. I was also uneasy about handling the uncertainty of not knowing how long I would have to wait to see a benefits navigation staff member. Waiting around for undetermined amounts of time, regardless of length, gives me a lot of anxiety and can be overwhelming. But I was fearful to go elsewhere in DC because I was scared of being misgendered, and I was drained enough from trying to get help that I had little energy left to self-advocate with regards to my gender identity.

I have been able to stay relatively safe and housed because of my truly amazing support system, but I can only imagine how much more difficult a situation like mine can be, for people who don’t have the support system I have. It angers me when I hear elected officials talking about how it’s "too easy" to get government benefits, and then propose policies to make accessing benefits harder. We, as a community, need to challenge ourselves to do better, and for our elected officials to do better.

Wednesday, July 5, 2017

Ultra Testing: When Companies Actively Recruit Autistic Employees

M. Kelter
theinvisiblestrings.com

Ultra Testing is a New York-based tech firm that was founded on the idea of incorporating autistic differences into their work ethos. At a time when an estimated 80% of adults on the spectrum are unemployed, Ultra Testing is using attribute metrics and other non-traditional hiring practices to recruit autistic employees. A 2016 Recode article reported that 75% of the company's employee base identifies as being on the spectrum.

I recently communicated with the firm's co-founder, Art Shectman, about how the company began, the value of ditching traditional hiring practices, and what employers need to know about developing a neurodiverse workforce.

M: Regarding Ultra Testing's decision to focus on hiring autistic employees: can you describe the origins of this idea, both generally (how the idea came about), and specifically (how you actually went about recruiting and bringing in folks on the spectrum?)

Art Shectman | source: Twitter
[image: White man in dark suit jacket, posing in
front of a summer-foliage wisteria bush
Art Shectman: My co-founder Rajesh Anandan is my hero, my MIT schoolmate, and fraternity pledge brother. He's the one person I know who's chosen a path of philanthropic and foundational social impact work, and he works every day to make the world a better place. In his travels with UNICEF he saw many children and disabled folks discarded, and living very difficult lives. He had a theory on sustainable change, that if you could align the extra abilities that sometimes accompany disabilities with a competitive advantage, you could create a competitive business and a job creation engine.

We had dinner, and we're reviewing a list of disability, size of population and extra ability and possible career alignment. That list was compiled by a  strategy firm called STAX, run by our first supporter, Rafi Musher, a great philanthropist and impact investor. I saw Autism and Software getting on the list and as I also run a software engineering firm and buy QA services. I said "let's give it a try." Three days later, we hired some testers and gave it a rip, and the results were great. Then we set to work to operationalize that early success into a scalable repeatable differentiated service provider.

The recruiting process at first was to call GRASP and ASTEP for referrals. Over time, we've built a network of some 200 "nodes," where we hunt for talent on the spectrum. We have a community manager who is on the spectrum, and who helps us build that network out and helps us coordinate candidates.

Once we had a process for sourcing candidates, we had to build an attribute and simulation-based set of recruiting tasks that try to leverage the most current talent research—which mostly says traditional interviews are junk. It's been a unique challenge to make it all work, but really it is a system or set of behaviors around recruiting that would apply for neurotypical and neurodivergent folks alike.

M: Work places tend to develop a distinctive office culture over time, though if I understand correctly, Ultra Testing employees work remotely. Are people doing their jobs independently, or is it more of a cooperative, interactive scene?

Art: We have rich interactions every day with Engagement Managers, other testers and on our corporate Slack channels of all varieties. The culture is extremely interactive and collaborative.

M: Does Ultra Testing have an "office culture"? I wonder if this concept looks any different when many of your employees are autistic. If you could paint a picture of what it feels like to work at Ultra Testing on a daily basis, I would love to hear that.

Art: There is an amazingly rich corporate culture. It looks very much the same as any other culture, folks are serious, silly, insightful, and a whole host of other emotions that you might find anywhere else. Above all our team has a culture of collaboration over accommodation, and we are focused on creating a neurodiverse space where we embrace our differences. It's a fun and caring place to work. If we succeed we want people to have options of where to work, and to stay at ULTRA because it's a great place to work.

M: There are ongoing concerns in the autism community about the way the media presents any job for an autistic as a positive thing, regardless of whether or not the work is actually meaningful or valuable to the autistic employee. I think people are hoping to see more of an emphasis on good jobs, not just busywork that others may not want to do.

Art: I disagree to some degree here. I feel that there are a spectrum of jobs that are great fits for the spectrum of folks on the spectrum. Where do I agree is that there is a knee jerk concept of what those jobs should be (busywork).

While there are many jobs regardless of whether you are on the spectrum that are busy work, a job still brings empowerment and self-sufficiency in a way that being unemployed does not. There are neurodiverse folks who are happy to do all kinds of jobs. With 1MM or so folks on the spectrum who are readily employable, any job where an employer is embracing neurodiversity (not accommodating it), and where a candidate wants the job, and has a natural propensity to do that job, is a good job in my opinion.

I do take your point, and we fight the general media bias all the time. We created the DifferentBetter Challenge to try to shift the discussion to competitive advantage, and away from human interest, for many of the same reasons.

This is somewhat of a loaded question, and there's a personal bias there about "meaningful" and "fulfilling." However, that said, I'd agree that a person should have employment options and should be able to have a job that they find meaningful and fulfilling. Maybe I'll defer to a quote from a recent neo.life article about Ultra Testing:
"Now the fact of his employment has become routine for Cha. When asked whether he plans to stay on, he says, simply: “The work is interesting, and I like the people. As long as those two conditions apply, I will be here.”"
M: I know Ultra Testing does regular satisfaction checks with employees. Can you discuss that—why Ultra Testing decided to perform satisfaction checks, and how you ensure that they are meaningful and not just a token effort?

Art: We decided to do it because there is documented research on the productivity costs of team happiness, and how it pays to measure and track it. We've evolved our survey over the years to gauge the many facets of anxiety and job satisfaction that our teams have taught us are meaningful, through their survey responses.

The only way to ensure the responses are meaningful is to really care about them from the most senior level down, which we do, and then to make a culture and habit of responding to feedback. If the staff thinks feedback isn't heard or acted upon, they stop giving it. If they feel they don't have a sense of agency to impact their environment, they stop trying.

Most of our staff need to be coaxed out of their shell, and our super supportive and caring culture helps us do that. Many employees have had experiences where their differences were a source of stress, conflict and ridicule. It takes time to feel comfortable sharing and embracing differences, and realizing that we are all building the company together, and that their feedback is welcome.

M: I read that you tailor hiring practices to a variety of autistic differences (for example, you offer alternatives to traditional interviews, and do not emphasize a need for prior work experience). At first glance, these seem like genuinely beneficial practices that many businesses could replicate. Help me understand employer thinking about this. What are the barriers that would make it difficult for other companies to engage in similar efforts and find alternatives to old school hiring methods?

Art: Folks just can't let go of tradition, even when the research says people are terrible at interviews, and suffer nearly insurmountable first impression biases. It also takes work, measurement of data, and testing and learning and reconfiguring until you get to role-specific practices that help you recruit in non-traditional ways. Most bigger companies do this, but they haven't expanded their programs to include neurodiversity yet.

M: What would your advice be to other companies, about creating mutually beneficial spaces for autistic workers?

Art: Recruit for unbiased attributes that make an employee successful in the job. Then exercise and build collaboration over accommodation.

M: On a personal level, have you learned anything about autism from your experiences at Ultra Testing that you didn't know before? Popular culture generally offers a distorted view of what autism is really like, so I was wondering if your view of autism has evolved in any unexpected ways.

Art: It has, but I'm not qualified to have an opinion here. I would just say that I'm continually reminded that our original theory that our differences make us better remains true. I'd say my views on the power of a neurodiverse workforce are what have evolved the most, and it is a really powerful thing.

Monday, June 5, 2017

Book Review: There’s More Than One Way Home

Maxfield Sparrow
unstrangemind.com

A mother’s worst nightmare: That’s what Anna thinks she might be facing at the beginning of Donna Levin’s spellbinding novel There's More Than One Way Home. It’s 2004 and Anna has accompanied her Autistic son, Jack, as a class chaperone on a field trip to Minotaur Island near San Francisco. When four children—Jack among them—turn up missing, Anna fears the worst.

Everyone pulls together to comb the island, and the boys are found.  One is dead after all, but to Anna’s guilty relief, it is not her Jack. Thus begins a mother’s second worst nightmare, as Jack is accused of murder. The story unfolds from there: Jack’s loving but authoritarian father’s hands are tied with respect to the case, since he is the district attorney and thus has a conflict of interest. Free-spirited Doctor Valentine helps keep Jack out of the crushing institutionalization of the combined penal and psychiatric systems, while flirting with Anna behind her husband’s back. And Anna is caught in the middle of everything, facing choices not unlike those of her namesake in Tolstoy’s classic novel, Anna Karenina.

Can Jack be saved from a life of imprisonment? Can Jack’s father, Alex, get re-elected to his position in the midst of such a public scandal? Will Anna follow her head and stay with Alex, or follow her heart with sensitive and seductive Dr. Valentine—Val, as he asks everyone to call him? All these questions are explored in the novel’s pages, and primarily the story focuses on Anna.

There were things I loved about this novel and things that made me rather uncomfortable about it. Before I elaborate, I should note that I don’t think I am the book's target reader. This was a novel clearly written about, and for, non-autistic mothers of Autistic children. As an Autistic adult who has not raised a child, my view of the story might be slightly different from that of the intended reader. Do I think the mother of an Autistic child will enjoy this novel? Oh, definitely yes. But I hope potential readers will find value in my insights about the novel as well.

First off, I did greatly enjoy the novel. It is well-written and pulled me right into the story straight away. I was eager to find out what would happen next at every moment, and all the characters were well-developed, with blessings and flaws, quirks and agendas. I felt like I was reading about real people, not characters ... although this leads me to my first complaint about the story: Jack himself was not a well-developed character.

Jack felt more like a plot point to me than a person. I knew some of his preferences and fears, and his speech pattern made it always clear when he was speaking. But he never felt like a full person to me like Anna, Alex, or Val did. It wasn’t just because Jack wasn’t the protagonist, because I felt more full-roundedness from Alex, whose presence in the story was much like his presence in his home: brief appearances here and there, but mostly disengaged from the action and the emotions of the novel. Yet even his character felt more real to me than Jack’s. Although the novel was about Anna and her character was very well developed, I was disappointed to feel like Jack was more of a plot device.

Despite Jack’s less-articulated character, Anna very clearly loves Jack, and I loved that about the novel. Her love is depicted as complex and questioning, but very strong. Opening on a crisis gives us a chance to see Anna regretting being irritated with some of Jack’s autistic traits, and resolving to be more accepting and more appreciative. Throughout the novel, Anna moves back and forth between being bothered by Jack’s autism and being accepting of it. While some might expect me to dislike that, since I write so much about autism acceptance, actually I was delighted by the depiction of Anna’s struggles with autism acceptance because it made her feel so much more real to me.

Anna has a great voice as story narrator. She is extremely well-educated and regularly makes references to literature and pop culture. Not only is she smart, but she’s snarky, making her perspective on events lively and entertaining. There was one point, however, where I felt like she crossed a line with her zesty sense of humor, leaving me feeling cold and uncomfortable.  “I hadn’t left him with a sitter for an evening the first six months,” Anna tells us readers, “but by then I was sympathizing with Andrea Yates.”

I understand that Anna’s character is trying to be darkly humorous with that comment, but it went too far into darkness for my tastes. Joking about murdering one’s children is already in very poor taste. But when the child in question is also autistic? That goes far beyond the pale. An average of 80 disabled people per year, many of them autistic, are killed by parents of caregivers. So often, society’s response is to shrug and say how understandable it is that a parent would want to be rid of such a burden. Filicide is an ongoing and very painful issue in autism communities and even a work of fiction has certain political obligations to the demographic it portrays. While I loved Levin’s book overall, this one sentence weighed heavily on my heart when I read it. I can forgive Jack being less developed than other characters, but it’s not so easy for me to shrug off Anna’s identification with a woman who murdered her five children.

Other than that gruesome note, I do recommend There’s More Than One Way Home to readers. Anna felt like a clever, chatty friend, and I genuinely cared about her decisions and the repercussions of those choices. Jack was lively and lovable. Levin’s villains had humanity, and her heroes had feet of clay. Overall, I feel she rose to the challenge of writing a story with an autistic major character and her storytelling skills had me turning page after page, late into the night. Readers, particularly those with autistic children of their own, will find a friend in Anna Kagen—someone who’s been down the same path, with her wit and humor intact.

Saturday, June 3, 2017

IMFAR: Now With More Autistic Priorities! TPGA's 2017 Conference Report

Shannon Des Roches Rosa 
Senior Editor, TPGA

Welcome to IMFAR 2017!
[image: three white autistic folks: Corina Becker,
Steven Kapp, & Carol Greenburg, posing by
the "Welcome to IMFAR 2017" sign.]
We have been reporting from IMFAR, the annual International Meeting for Autism Research, since 2011. This year we provided general live coverage via Twitter, with select roundups including the Press Conference, and highlights from sessions such as Autism and AgingUnderstanding Barriers to Autism Diagnoses for Children from Racial/Ethnic Minority Groups in the U.S.Mental Health Crises in Autistic Youth, and Autism and Sexuality. We also co-hosted the #AutIMFAR chat with autistic and autism research community members.

While the research presented at IMFAR continues to be varied in scope, and is still too disproportionately skewed towards prenatal, infant, and early childhood findings, our takeaway is that the 2017 meeting in San Francisco had the biggest increase in neurodiversity-oriented content and attendees we've seen so far. This is a welcome shift.

There were no fewer than five autistic media members at the press conference, including first-time IMFAR attendees John Marble for NOS Magazine, and Elizabeth Bartmess of #autchat, along with IMFAR veterans Carol Greenburg of TPGA, Corina Becker of Autism Women's Network, and Dena Gassner. In addition to this increase in (openly) autistic participants, several events were dedicated to autistic feedback on the direction of autism research. And I can't imagine acceptance-based research being included in IMFAR's early years, yet in 2017, there it was:
Even though IMFAR 2017 saw improvement in the direction(s) of autism research, there was also much of the same old same old, according to University of Edinburgh researcher Sue Fletcher-Watson. And the needed epiphanies and attitude shifts resulting from focusing more on autistic needs often meant discussing unpleasant under-scrutinized realities, as Emily Willingham reported, in Half Of Autistic Adults Feel A Low Sense Of Well Being. But overall, a positive shift in including and respecting autistic people themselves was palpable:
"The focus at IMFAR on an autistic perspective and autistic adults represents a change in attitudes and emphasis at this enormous international conference over the years. Five years ago, the phrasing in most of these talks was “people with autism” and “subjects” with a distinct tone of condescension, and the populations in the studies were mostly boys. This year, people are “autistic people,” the tone is one of much greater respect and care, autistic people were visible and participating, and researchers seem to have realized that not all autistic people are little boys."
The more people talked about unmet autistic needs, the more under-examined topics emerged. Sue Fletcher-Watson (in person) and John Elder Robison (online) emphasized the need for researchers to pay attention to autism subjects autistic people and their allies consider common knowledge, then reinforce that knowledge with studies and data to both legitimize areas of need, and make them actionable. Precedents discussed during the conference include Liz Pellicano and Felicity Sedgwick's findings on autistic women's friendships, Noah Sasson and crew's observations on non-autistic people's harshly judgmental attitudes towards autistic people, and Lynsey Calder and team's confirmation that autistic children don't always share non-autistic social motivationsAutistica UK, a UK autism research charity that aims to be "the bridge between people with autism and researchers, ensuring that research responds to the needs of individuals with autism and their families," has even provided a list of Top 10 Questions for Autism Research.

Researchers who addressed autistic needs at IMFAR itself include Sarah Cassidy, of Coventry University, who followed up on last year's groundbreaking autism and suicidality SIG with a SIG dedicated to asking the right questions and developing autism-appropriate support methods. Laura Crane and the team from University College London's Centre for Research in Autism and Education (CRAE) talked about helping autistic people, specifically minors, navigate Family Court systems (a TPGA interview with Dr. Crane is forthcoming). And the researchers in the panels on Mental Health Crises in Autistic Youth and Autism and Sexuality were mostly on point, according to autistic audience members.

But part of the problem, as CRAE's Liz Pellicano reported in 2014, remains that:
"Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap."
Which is exactly what was discussed during Dena Gassner's Special Interest Group on Incorporating Autistic Intellect (a follow-up to her IMFAR 2016 panel), for example:
IMFAR 2017 Autistic Intellect SIG panelists:
Steven Kapp, John Robison, Dena Gassner, Stephen Shore

[image: four white autistic people posing in a hotel conference room.]
Another IMFAR 2017 event channeling autistic priorities and knowledge was AutIMFAR, a Twitter chat with both onsite and online participants from the autistic and/or autism research communities, co-hosted by #autchat, The Autistic Self Advocacy Network, Autism Women's Network, NOS Magazine, and Thinking Person's Guide to Autism. During the chat, we asked participants these 10 questions:
  1. What top three priorities would you pick for autism research, if you could? 
  2. What are some really obvious-to-autistic people under-researched autism areas? 
  3. What are some disconnects you’ve observed between research findings and #actuallyautistic experiences?
  4. What kinds of feedback from autistic people are most useful to researchers? 
  5. How can autistic communities support researchers whose work we value? Can we provide leverage in getting funding?
  6. How can autistic & autism research communities better support autistic autism researchers and increase their numbers?
  7. What shifts have you seen in inclusion of autistic community feedback on research over time? How can this improve?
  8. For people with experience interfacing with both communities: What has surprised you about each?
  9. What disconnects do you see between autism research and clinical practice? 
  10. Any topics we’ve missed that you’d like to discuss? 
The #AutIMFAR chat's full responses were valuable, varied, and voluminous (and very much worth your time). Some highlights:

And a few responses that need to be plastered on the wall of every autism research area, such as:

The #AutIMFAR Onsite Crew
[image: hotel conference room gathering of autistic & non-autistic researchers
& community members, of various genders & races, mostly white & female,
which is fairly representative for IMFAR.]
Even the traditional stakeholder's lunch pivoted on autistic input. Emcee John Elder Robison put representatives from Autism Speaks, SPARK, and the Autism Science Foundation on the spot, by asking them to tell the audience how they incorporate autistic people and priorities into their efforts, and why he thinks this is important:

The autism research organizations' representatives' responses to Robison's challenge ranged from enthusiastic and exemplary, to surprised and tentative, but the message is clear: Autistic people are holding autism research organizations accountable, and need to be included in autism research efforts. It is no longer acceptable for autism research conference participants to talk about autistic people as "them"; these discussions need to be about "us."

IMFAR selfie: Shannon Rosa & Deb Karhson
[image: a white woman with red hair and duck lips,
and a smiling Sri Lankan/Nigerian-American woman
with glasses and long curly black hair]
I also spent time chatting with Stanford's Dr. Deb Karhson, whom TPGA recently interviewed, and whose adult brother is a high-support autistic dude like my own son. When weren't politely but firmly dual-info-firehosing a journalist who unwittingly dropped the oh-no-he-didn't of an "autism is like cancer because" comparison on us during Deb's poster on blood-based biomarkers, we were musing about how people with ability profiles like the beloved autistic men in our lives were still mostly sidelined, disrespected, pitied, or objectified during IMFAR 2017:



Hopefully future IMFARs (which will be rebranded as INSARs, starting in 2018) will make progress in addressing and respecting the needs of autistic people of all abilities as well. Deb and I and many others will certainly be monitoring the situation.

----

P.S. It's not a contest, but, we did win #IMFAR2017—purely in terms of our Twitter coverage. Spectrum's team won for articles published during and about the conference.
TPGA earns its media press pass, once again
[image: Twitter analysis of the top influences of #IMFAR2017:
two columns: top ten by mentions, & top 10 by tweets;
TPGA as @thinkingautism holds the top position in both columns]