Monday, June 5, 2017

Book Review: There’s More Than One Way Home

Maxfield Sparrow

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]