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

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

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 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

Sparrow M. Rose

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]

Saturday, May 20, 2017

What the Fidget Spinners Fad Reveals About Disability Discrimination

Aiyana Bailin

Photo © Robert Couse-Baker / Creative Commons
[image: Hand holding a spinning fidget]
I'm angry about the sudden popularity of fidget spinners, but probably not for the reasons you think. I'm not mad that they're disruptive in class, or obnoxiously trendy. I'm furious because of what they reveal about societal power structures, and the pathologizing of disabled people by non-disabled persons.

Autistic people (and others with developmental disabilities) have been fighting a war for decades. It's a war against being forcibly, often brutally, conditioned to behave more like neurotypicals, no matter the cost to our own comfort, safety, and sanity. And those of us who need to stim in order to concentrate (usually by performing small, repetitive behaviors like, oh I don't know, spinning something) have endured decades of "Quiet Hands" protocols, of being sent to the principal's office for fidgeting, of being told "put that down/stop that and pay attention!," when we are in fact doing the very thing that allows us to pay attention instead of being horribly distracted by a million other discomforts such as buzzing lights and scratchy clothing. We've had our hands slapped and our comfort objects confiscated. We've been made to sit on our hands. We've been tied down. Yes, disabled children get restrained—physically restrained—in classrooms and therapy sessions and many other settings, for doing something that has now become a massive fad.

Think about this: Decades of emotional punishment, physical violence, and other abuses. And then some guy (who just happens to be in a position with more social clout than most disabled people will ever attain) writes an article about how having a fidget toy helps him concentrate during meetings, and all of a sudden, every neurotypical person in America is falling all over themselves to get a fidget toy of their own. The first time I heard about the fidget spinner craze on the news, I wasn't sure whether to laugh or cry. But I was leaning toward "cry," for the reasons I just explained, and because the irony made me feel ill. Sometimes the universe has a cruel sense of humor.

This is important. Really important, so read this next sentence twice: Something that was considered entirely pathological and in dire need of correction when done by disabled people is now perfectly acceptable because it is being done by non-disabled people. This should make you stop and think, especially if you are someone who works with, educates, or researches people with diagnoses like autism.

What else might we de-pathologize overnight once the "right" people, the "normal" people, the "healthy" people start doing it? Will somebody write a tweet that makes it socially acceptable to avoid eye contact? Will a Facebook meme make it suddenly trendy to have texture sensitivities? Will hand-flapping become cool after it shows up in a music video?

Normality is an illusion. It doesn't exist. Human culture is constantly changing, and our everyday behaviors are changing with it, more than ever in the fast-paced digital age (yeah, I'm old enough to remember when phones couldn't go everywhere with you, and believe me, social norms were very different back then). Even if "normal" did exist, setting it as the goal towards which disabled people should strive is unacceptable.

Because insisting that disabled people act more like non-disabled people is not about improving functionality, it's about who has the power to set social standards. It's the same reason certain accents and dialects are considered less "educated" and the people who speak that way snubbed. It's the same reason people with one skin tone are portrayed as less capable, or more dangerous, than people with the majority's skin tone. It's​ why "women's work" is devalued and underpaid. In short, it's oppression, plain and simple.

Perhaps I should be more hopeful. Perhaps we're moving towards an era of acceptance. Even before the fidget spinner hit the spotlight, more and more professionals have agreed that sensory needs are real, and should be acknowledged and met. Many websites now sell chewy toys, app stores abound with sensory relaxation apps, and plenty of autism "treatment" programs (though certainly not all) have moved away from their prior focus on sitting still with immobilized hands while grudgingly accepted that stimming is actually a perfectly healthy thing for autistic people to do.

But the power structure is still there. There's still a rigid hierarchy of who gets to decide which behaviors are normal or pathological. There's still a societal subtext that tells people who are different "be less like yourself and more like us." We need to work on that.

Wednesday, May 10, 2017

Why Supported Decision Making Is a Better Choice Than Conservatorship

Family hugs

Image © Falashad | Creative Commons
  [image: Smiling white woman with crown braids
hugging a person with an auburn ponytail.]
Many families or guardians assume that when high-support autistic teenagers transition to adulthood, they automatically need to be legally conserved for their own protection. But that's isn't necessarily true. We spoke with UCSF's Dr. Clarissa Kripke about why Supported Decision Making can be a better choice than pursuing conservatorship, and the many reasons why.


Dr. Clarissa Kripke: When people with disabilities and their families start to think about transitioning from child to adult services, they are often encouraged to consider conservatorship. 

Conservatorship is a legal process where a court appoints an individual or organization to make decisions for an adult. Courts do this after finding that the adult is unable to provide for his or her own needs for health, food, clothing, or shelter. They must be found unable even with supports, and there must be no less restrictive option available. The court can grant a limited conservatorship to make some decisions, or a full conservatorship to make nearly all decisions. 

Fortunately, there is a less restrictive option, called Supported Decision Making which is less expensive, less burdensome to families, more flexible, and which promotes development, opportunity, and safety.

Thinking Person's Guide to Autism: When it comes to conservatorship, what are some of the main misunderstandings you've observed?

Kripke: Some families fear that they will not be able to continue to provide support, or to be involved with their children’s educational planning, health care, or service planning, unless they are named conservators. Schools often encourage families to include conservatorship as part of transition planning, mistakenly informing parents that without conservatorship they will not be able to participate in their child’s Individual Education Plan meeting. 

This is untrue. Under the Lanterman Act, parents or other authorized representatives are involved as much as their disabled children want and need them to be. A Supported Health Care Decision Making agreement can clarify roles and assure that confidential information can be shared within a circle of support, and that supporters can attend appointments and meetings.

Families often feel that conservatorship will increase their loved one’s safety. However, the best way to ensure safety is to teach and empower a person with disabilities to direct their own life. When people can communicate directly about their preferences they are more likely to end up in a good situation and with people they trust.

Some parents and professionals believe that conservatorships are necessary for people with cognitive disabilities and recommend them routinely as part of transition planning. However, even people with the most profound disabilities can retain their legal capacity, even if they cannot independently meet the legal standard for informed consent for some or all medical decisions. The United Nations Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life. It obliges states to provide access to support for people with disabilities to exercise their legal capacity.

TPGA: What do the rights of a person who has been conserved look like? 

Kripke: Imagine what your life would be like if, when you reached the age of 18, your parents decided everything about your life—where you live, what you eat, what health care you receive, where you spend your money, and how you spend your day, and with whom? What if a judge said they could make those decisions without consulting you, not just for a few years, but forever? What if people called your parents instead of you about important decisions in your life? Imagine what would happen as your parents got older and a judge handed that power over your life to a stranger who you didn’t get to choose? We do this to people with disabilities when we conserve them.

Fortunately, in California, most regional center clients, even those who have very little expressive communication skills, are unconserved. Regional center clients are entitled to support such as transportation, assistive technology, education, and personal assistance. They still receive health care, disability payments, communication help, services and supports, and participate in their individual program planning to the extent that they are able with the support of family, friends, significant others, service coordinators, clinicians, payees, the client rights advocate, and other service providers. With Supported Decision Making, you can get the support you need to direct your own life.

TPGA: It appears that opting for supported decision making instead of conservatorship gives an individual the highest likelihood of having a strong circle of support. Can you talk about why this is?

Kripke: With Supported Decision Making, you can make agreements with as many people as you wish. For example, many of us would ask a different person for help understanding our finances than we would for understanding our health. Also, many people want different types of support from different people. One person may provide transportation and physical assistance while another provides support for communication.

TPGA: What are some of the benefits of supported decision making for the individual, in terms of growth and learning as an adult?

Kripke: When people are given opportunities to make decisions, they develop skills and learn from mistakes. When people are engaged in the decision-making process and given communication supports, they are more likely to engage. Supported Decision Making gives people with disabilities the opportunity to make choices for themselves. Sometimes this involves taking some risks and taking responsibility for the consequences. This is how we all learn and grow.

TPGA: What are some of the long-term benefits for supported decision making for the family? It seems as though parents' ability to serve as conservators may become more challenging as everyone ages.

Kripke: The people who will provide your child services and supports decades from now, may not have been born yet. People who you have in mind to take over your role may be unwilling or unable to do so by the time they are called to serve. Parents are not the people who will decide who succeeds them as conservator. A judge will. And a judge can remove a parent at any time if they do not like the way they make decisions. They can also compel a conservator to continue to serve even if the conservator moves out of state, or if serving becomes difficult. Parents often develop their own health problems and are less available to provide support over time. Without permission from a judge, nobody else can step in to share the responsibility. This also means that potential successors don’t have an opportunity to learn about your child and their role before they are named conservator.

Supported Decision Making is much more flexible. It keeps the person with a disability in charge of choosing who provides them support and the type of support they want. This typically changes as they age, and as their relationships and circumstances evolve. People can serve for long or short periods of time or share responsibility. Supporters can be friends or family or paid professionals.

TPGA: Do parents in the U.S. have to make a legal decision about their child's future, in terms of conservatorship or supported decision making, by the time the child is 18 years old?

Kripke: No. Just like everybody else, people with disabilities learn and grow—sometimes dramatically. Augmentative and alternative communication (AAC) is an emerging field, and many people who were not able to express themselves in the past are now able to do so. Sometimes new technologies or adaptive equipment can increase people’s skills. 

Supported Decision Making takes into account the fact that capacity fluctuates over time and in different environments and with the type of support they receive. Not only can people with disabilities improve their skills at making decisions and expressing themselves, supporters can improve their skills in learning how to listen.

Currently, only two states have adopted supported decision-making into their legal capacity statutes: Texas and Delaware. It’s important that we see more states adopt Supported Decision Making laws – while supported decision making agreements don’t require legislation in order to be implemented, they are more likely to be respected by banks, clinicians and other entities when they are placed into statute.

TPGA: What if an individual develop skills that afford them more independence after they have been conserved? Can the conservatorship be reversed?

Kripke: Courts evaluate a person at a particular moment in their live without regard to whether the person might develop new skills or their circumstances might change, but their rulings continue indefinitely. Conservatorships are very hard to undo once they are put in place, and it rarely happens. Once someone is conserved, their agency is often overlooked, which has life-long consequences. 

There is no rush. While conservatorships are rarely reversed, a limited conservatorship can be pursued at any time in the future if a need arises that can’t be managed any other way. If someone is already conserved, conservators can still respect will and preference and implement supported decision making principles.

In addition to being very challenging to reverse, there is no guarantee that a conservatorship will transfer as a parent may wish after their death. While a plan may be put in place to set a sibling or other relative as a conservator after the initial one dies, the court has the ultimate decision-making authority: opening up the possibility for people to be placed under professional conservators, who may have dozens of clients and are not actively engaged in a person’s life. This can lead to institutionalization and neglect.

TPGA: What are good resources for families who need guidance about ensuring individuals' rights are protected and respected as they transition into adulthood?

My favorite video about Supported Decision Making is Gabby’s Story. Susan Mizner, Disabilities Counsel from American Civil Liberties Union recently discussed Supported Decision Making (video). ACLU has a helpful Frequently Asked Questions Fact Sheet. To learn more about supported decision-making models around the world, check out the Autistic Self Advocacy Network’s resource The Right To Make Choices. The Office of Developmental Primary Care has videos, training materials, and links to additional resources on its Supported Decision Making page.


To improve health outcomes for people with developmental disabilities, you can make a tax deductible donation to support the Office of Developmental Primary Care.


Dr. Clarissa Kripke, M.D., FAAFP is Clinical Professor of Family and Community Medicine at the University of California, San Francisco. She is Director of the Office of Developmental Primary Care, and of CART Services, an interdisciplinary, mobile, health care consultation team serving Regional Center clients in Northern California. Our team is deeply committed to supporting people with developmental disabilities to be as healthy as possible. We know that, with access to the right supports and services, even people with the most complex needs can live successfully in the community of their choice.

Tuesday, May 9, 2017

Autism and Suicidality: Conversations Between Researchers and Autistic People

Photo © Gayan Gunawardana | Creative Commons
[image: Backlit photo of a sad ponytailed person
with their head down, in profile in front of an
ocean sunset.]
Dr. Sarah Cassidy co-chaired a SIG (Special Interest Group) on Autism and Suicidality at IMFAR 2016, in Baltimore. We weren't able to attend her session, but Dr. Cassidy was kind enough to take time, later that same day, to talk with TPGA editors Shannon Rosa and Carol Greenburg, autistic autism researcher Dr. Steven Kapp, and Autistic Self Advocacy Network Executive Director Julia Bascom. The following is a transcript of our conversation.


Shannon Rosa: Tell us about what you discussed in the SIG. What has your research revealed about suicidality in autistic people?

Dr. Cassidy: We’ve published two studies so far. The first study we did, which is free to access in the new Lancet (Psychiatry) journal, was a medical chart review, a type of data mining, at the Autism Research Center, Cambridge University, UK. It had a clinic called the Cambridge Lifetime Asperger’s Service (CLASS) Clinic, which was set up by Simon Baron-Cohen, and specialized in the diagnosis of Asperger’s in adulthood.

The clinicians collected a lot of data from individuals before they went though the diagnostic appointment, such as:
  1. Have you ever contemplated suicide in your lifetime
  2. Have you ever planned or attempted suicide in your lifetime
  3. Have you ever been diagnosed with depression.
Everyone seen over a nine-year period was asked these same three questions very consistently. They also completed the AQ and EQ questionnaires.

When we analyzed all the data, we found 374 people had been diagnosed with Asperger’s syndrome, and out of those individuals, 66% had self-reports of contemplating suicide at some point in their lifetime. In the same group, one third had planned or attempted suicide in their lifetime, and about another third had been diagnosed with depression.  

That depression diagnosis was a significant risk factor in planning or attempting suicide, or suicidal ideation—those who had a diagnosis of depression were at significant risk for both those factors.

While everyone in the group had a diagnosis of Asperger’s, those who had planned or attempted suicide also had significantly more self-reported autistic traits than those who didn’t.

Carol Greenburg: I have a question, and I’m not quite sure how to ask it. How can you differentiate between an actual attempt at suicide, and an overdose that happens because of an autistic person’s medication not being properly monitored? Do you control for that?

Cassidy: I think that’s a really excellent question. In this particular study, which was retrospective, we just asked one question—one self-report question—which was “have you ever planned or attempted suicide in your lifetime?”

So it wasn’t looking at “completed” suicides, where you’re not sure if it was an accidental overdose or it it was deliberate. And this was self-report. I think that’s a real challenge, for coroner studies, or studies of “completed” suicides. In the UK, those kinds of suicides are recorded as “open verdict.” We don’t know unless they leave a note.

Greenburg: That’s what we have in the U.S., too; they say that it was not possible to determine whether it was an accidental or deliberate overdose.

Steven Kapp: I’ve seen in many studies that higher numbers of autistic traits, whether in adolescents or adults, or perceived differences from typical peers, or attributing social difficulties to oneself—any way you slice it—exposure to normalization attitudes is usually related to higher rates of depression, and anxiety, and internalized ableism. We did find this even in a self-reporting using an online screener, that a higher level of  autistic traits was related to lower self-endorsed quality of life, and a feeling of disempowerment. Because the stigma is still so high, and there are still so many forces against you, that people might not be disclosing even if they’re relatively comfortable with who they are.

Cassidy: The 66% rate of depression of autistic people in our study was higher than those in other studies, higher than the 59% rate in a sample of patients diagnosed with psychosis, and significantly higher than people diagnosed with one or more medical illnesses, significantly higher than the UK general population, where a similar self-report questionnaire was used, and where the rate is 17%.

Julia Bascom: What are the next steps, in terms of supports and prevention? What did you talk about during the SIG?

Cassidy: It was really eye-opening to hear from autistic people and family members, and quite hard-hitting as well. Because a lot of the limited research, which is really only about eight studies looking at suicidality in adults, adolescents, and children with autism, are usually only counting studies about prevalence, about “how common is it?? But nothing about how does it develop, what are the family experiences and dynamics. What are the interventions we can do now? It’s not enough to talk about rates. You can have as many counting studies as you want, but knowing that the rate is high doesn’t really tell you what to do about it, especially in the short term.

We need to know what the risk factors are, whether there are protective factors? What is the difference between people with autism who experience suicidality and those that don’t, and how does that compare to the general population?

What really came out of the study is that we need some short-term goals, right now, and to come up with useful guidelines for parents and clinicians who are trying to help people experiencing these difficulties.

What was really great is that there were people at the SIG who had access to really big research databases like the Interactive Autism Network, ones in Newcastle and Cambridge, and Swedish databases. We talked about sharing out expertise, and actually do a qualitative survey targeting parents, young people with autism, and adults with autism—and asking them “what kind of supports do you actually need? What would help you, if you were experiencing these kind of difficulties?” So we could try to make recommendations about what the next steps could be, and interventions or preventative measures or supports we need to develop.

Another thing we discussed during the SIG was sharing data. In our study, we have a short set of questions that could be collected routinely in all of the studies that we do, so we could put data together and look at a variety of factors. Things like quality of life are really, really important. And there is really exciting work going on, in developing quality of life measures specifically for people with autism, and the unique challenges that they have. So if we provide these quick questions to go with it, we’d be able to directly compare and pull resources, and ideally untangle some of the causatory factors.

The last thing that came out, because there are lots of research questions to sift through and get feedback on, but another thing we really want to do is to run a seminar series. In the SIG we only had 1 1/2 hours, and could only scratch the surface. So we want to hold a seminar series in the UK, try to get funding for that, and invite people from Canada, Sweden and other European countries, The US, involving autistic people, families, funders, researchers, clinicians who are interested in this topic. I want it to be like the SIG, involving lots of different stakeholders, because it’s really important to include everyone involved when talking about next steps and research priorities.

I think we’ve done as much as we can with the prevalence and counting studies; we need to go a bit further and ask what we’re going to do about it, what is the response going to be, and how can we pull resources so we don’t waste time doing more of the same? So we can do something useful?

Bascom: Was there any discussion (in US or other countries) of where to find supports and resources for people with developmental disabilities and communication disabilities (autistic or not)? Because this is a huge problem—it’s very difficult to find mental health providers for people with developmental disabilities, especially if they’re autistic, especially if they also have intellectual disability, limited speech, or don’t have a good communication system. As an advocacy organization, ASAN considers this area really important, but we often feel like our hands are tied because people will come to us, and ask for resources—and they just don’t exist, because the providers don’t exist. Was there any discussion about how these factors might be affecting the numbers?

Cassidy: What we did discuss—and it was to do with preventative strategies, interventions, and treatments—is trying to improve experiences of hospitalization. There was talk of doctors or clinicians overreacting, and over-intervening, or not knowing how to intervene. We need those guidelines, and there’s so little research on it. Just taking simple steps, like using the NAS hospital passports that give out information like:

  • This is what my pain threshold is like
  • This is how I prefer to be communicated with
  • I’m verbal/I’m not verbal
  • These are my interests
  • This is how you talk to me

And things like that. Also training health providers that they need to provide structure, they need to provide a bit more explanation, a little bit more processing time. Or they have to be aware of really literal interpretations. Just small things like that can make peoples’ experiences with health care scenarios so much better.

But we do need to have a research study, because most of this is anecdotal, from discussions with clinicians experiences with people with autism coming in, and they’re not to sure how to deal with them. And then there are other clinicians who are really excellent, who really do have experience in autism. But it’s not consistent.

Bascom: In the States, we have this huge gap between autistic people who need services and providers. You find people, like primary care providers or therapists, who don’t necessarily have autism training but are good with autistic people—and then people find out about them and then they’re overloaded and can’t take more patients. We have an association, The NADD, that tries to be specifically for people with autism and developmental disabilities who need mental health support, but it’s so tiny, because there just hasn’t been funding for the training, and providers often think accommodating autistic patients is going to be a lot more complicated than it is. There’s a lot of room for specific training, but we certainly don’t have any large US organizations who are trying to do anything like the UK’s NAS Passport yet. ASAN helped AASPIRE develop a customizable healthcare toolkit, and it’s great, but it hasn’t gone to scale in any meaningful way. So it’s interesting to hear that that’s what you’re looking at, as well.

Cassidy: NAS Wales had a great, very customizable toolkit. You go to the website, and you can click on different kinds of difficulties, and you can put in picture symbols.

The UK overall is evaluating the effectiveness of the passports, in terms of what’s the uptake, and what’s the experience of using it.

Bascom: There are people who are going to need specialized expertise. People who, for instance, are autistic and have communication disabilities, and they don’t have good access to AAC, and they have challenging behavioral issues—there are very few practitioners who even know where to start. Which is frustrating, because we know mental health disabilities are underlining a lot of what is going on, though that’s also kind of a separate population from what you (Dr. Cassidy) are talking about, I think. Or maybe there’s an assumption that it’s a separate population. It would be good to know how many of those kids grow up into suicidal adults.

Shannon Rosa: If you’re never accommodated, or understood…

Bascom: I can think of several people I know, who were that way as kids. And now as adults, they seem to be doing a lot better. But when you pay attention to their mental state, it’s a lot more dangerous than maybe when they were a little more open about what they were feeling.

Cassidy: We have a group of adults with autism who experienced suicidality, and they are helping us design a survey that goes into more detail, about the issue of lack of supports, and different kinds of difficulties and what causes them. One of them is a parent who has a diagnosis herself but also her son has a diagnoses. And she was saying similar things to what you (Julia Bascom) are saying, in looking back at the lack of supports throughout. I think it does take its toll, and we’re going to explore that a bit more.

My work is just for adults, but we need to expand it somehow, to look at children, and that developmental pathway. Or following up autistic children, because there are a lot of cohort studies in the UK and overseas, and making sure people include those questions and look at those things is going to be really important.


Dr. Cassidy will be co-chairing another SIG on autism and suicidality at IMFAR 2017.



Anyone who is feeling suicidal may receive immediate help by logging onto or by calling 1-800-SUICIDE. Suicide is preventable, and if you are feeling suicidal, you must get help. So please visit or call 1-800-SUICIDE immediately. Please also know that you are not alone.

MHAutism, which focuses on mental health for autistic people, has developed a Safety Plan, which allows those who are vulnerable to plan for when and if they experiencing suicidal thoughts, and also to record information to help other people provide supports.

For autistic people seeking specifically autistic perspectives, please read our archive posts below. While aimed towards younger people, they discuss getting through the kind of tough times familiar to autistic people of any age who have been conditioned into negativity:

Monday, May 8, 2017

Autism Researchers You Should Know: Dr. Deb Karhson

Dr. Deb Karhson is a postdoc at Stanford University, where she researches biology-rooted therapeutic approaches to improving autistic quality of life. She is also the "baby sib" of an older autistic brother. We are looking forward to having Dr. Karhson as a featured researcher during this week's #AutIMFAR chat at IMFAR, the International Meeting for Autism Research. Even better, we got to  interview her beforehand:

Dr. Deb Karhson
[image: Smiling Sri Lankan/Nigerian-American
woman with long curly black hair pushed to
one side, wearing glasses & hoop earrings.]
TPGA: Tell us about your research: What is your focus?

Dr. Deb Karhson: Broadly my current work is focused on biomarker discovery and drug development in for autism, which simply put means I’m looking for objective, testable, biological signatures of autism and whether candidate biomarkers can be leveraged for biotherapeutic development. And specifically, that means I’m interested in understanding the role of the endocannabinoid system in autism pathophysiology. The endocannabinoid system is the same system that mediates the effects of medical cannabis, so by understanding the role of this system in autism, we can also understand potential therapeutics that also act through/with the endocannabinoid system.

TPGA: What brought you into autism research?

Karhson: I am almost always preoccupied with what people are thinking and that is never truer than with my older brother (who is autistic). Growing up, I always felt like the literature never accurately answered the questions I was asking about autism or about concerned information processing. And then I realized that to study how people think meant understanding how brains worked which lead me to study Neuroscience. And now it’s my vehicle to asking as many questions as I please about autism.

TPGA: If you could be more than one person, what are some other areas of autism research you'd want to pursue, and why?

Karhson: I don’t know, off the top of my head I would split myself into at least three: one for studying language acquisition, which is probably influenced by my dissertation work in auditory attention and autism; one to study aging because there’s very little information on what “successful aging” looks like in autism and I have an older brother who is autistic; and one to study just girls with autism because I am a girl? And I think new research is coming out all the time about how different girls on the Spectrum are, which is both empowering as a woman and really interesting as a brain scientist.

TPGA: What are some changes you'd like to see, in terms of the general directions autism research tends to take?

Karhson: I wish there was greater emphasis placed on serving the current autistic population to improve quality of life. Similarly, if we keep repeating “one person on the spectrum is one person on the spectrum,” it would be nice to couch that in some hard data.

TPGA: Have you had any WTF experiences as a researcher on account of being either a woman, or a person of color—or both? If so, how did you push back?

Karhson: LOL, YES. Sometimes, it’s really subtle, like being told at national conferences that I speak English very well and am very articulate, which is super weird comment considering I’m a first-generation American and native English speaker.

Other times, it’s pretty overt like other students disparaging the need for diversity fellowship to me (i.e., calling me an affirmative action hire—which I would like to be clear, if I am, means I was put into the program to overcome the bias of an inherently prejudice or bigoted system that would otherwise exclude me because of my ethnicity and gender, not the other way around).

I also once attended a pretty elite autism workshop where I was the only under-represented ethnic minority and another participant very blatantly told me they were very surprised “to see someone like me” as a participant.

Push back for me is often time just about showing up, holding space, and speaking out. The higher up I go in academia, the more empowered I feel to really be visible and outspoken.

TPGA: As a sister to a high-support autistic adult, what are some autism myths you'd like to bust wide open?

Karhson: Can my answer be all of them? Vaccines, traumatic birth, or any other causation theorization. Should someone happen upon a data-driven answer to “what causes autism,” there will be no escaping the news of it. And the everyone has “special abilities.” If non-autistic people don’t have to come with a jewel in their belly or a Care Bear power, why are people with disabilities expected to? It is almost like a special ability is expected to justify the existence of people with disabilities.

TPGA: What are your thoughts on how society can better support and include autistic people like your brother?

Karhson: For one, stop messing with the fundamental rights of disabled people to access education, healthcare, and the ability to marry. It would be great to see larger swaths of non-disabled humans care about disability rights.

More urgently, I would really like better continuity between the end of formal state education and long-term post-education programs/systems, and more programs committed to providing meaningful jobs, community, and dignity and respect for adults like my brother.

TPGA: Do you have any advice for well-meaning young students interested in pursuing autism research?

Karhson: I would probably start by disabusing yourself of any savior complex you might have, then get involved in self-advocacy groups, and most importantly, if you don’t aren't autistic—shut up and listen. Just like any other marginalized group of humans, autistic people are the best at identifying areas in need of increased support and, in my case, research. And because of the robust heterogeneity in autism there needs to be more humans listening for overlaps and areas of commonality to improve, as those are likely to be the areas where the greatest impact will be felt for the community.


More about Dr. Karhson:

I completed my undergraduate training at Drexel University in biomedical engineering with a concentration in tissue engineering and biomaterials. During undergrad, I had three co-ops (its like an  extended paid internship), two of which were in the Neuroscience department at Baylor College of Medicine. Through these co-ops, I realized that neuroscience was my entry point to acquiring all academic knowledge on autism spectrum disorder (ASD), something I had been interested in since young as a baby sibling of someone on the autism spectrum. So following my co-op experiences, I completed a PhD in Neuroscience at Tulane University as a Southern Regional Education Board Doctoral Scholar. I trained in cognitive neuroscience and electroencephalography (EEG) technique to study auditory attention in neurotypical and non-neurotypical populations. For my dissertation research, I used EEG to measure brain waves and examine the intersection of auditory attention and atypical sensory reactivity in adults with autism.

However, as a baby sib, I wanted to be able to leverage my skills to address a more immediate need like better therapeutics, particularly for things like self-injurous behaviors. So now, I’m extending my training with a postdoc at Stanford University in the Psychiatry and Behavioral Science Department through a NIH T32 postdoctoral fellowship from the Center for Interdisciplinary Brain Sciences Research. My postdoctoral research is focused on understanding the role of the endocannabinoid system in autism pathophysiology. This is the same system that mediates the effects of medical cannabis and my research is studying the body’s natural version of these molecules, called endocannabinoids, and their relationship to core clinical features of autism. It is my hope that my research findings will help identify novel biomarkers of autism, assist in the development of therapeutics that improve quality of life, and elucidates contributing neurocircuitry in autism pathophysiology.