For a long time, Daniel Au Valencia got the message that she was wrong, wrong, wrong. She stood wrong. She talked wrong. She looked at people wrong.

“There’s a lot of shame around autism,” she says. “There’s a lot of being told you look weird.”

Valencia, 22, often taps her feet when talking to someone. Or she’ll flap her hands. She says those movements help her communicate emotions and stay calm.

“A common question is, ‘Why are you doing that?’ in a very accusatory tone,” she says.

Don’t even get her started on eye contact. A social skills teacher once tried to show her how to make eye contact without making people uncomfortable.

Don’t avoid it, but don’t stare.

“What I would have to do is, “Okay, eye contact. One, two, three, glance away, glance back. One, two, three, glance away,’” Valencia explains. “And at that point, I’m no longer listening, I am pretending to listen.”

A lot of people just walk away.

“It can be anxiety-provoking,” she says. “That anxiety comes from being excluded, being rejected, being ridiculed for things that are just part of naturally being me.”

Valencia likes hanging out with people. She’s into salsa dancing, acting, improv and Pokemon Go. But sometimes social situations can be so stressful that Valencia hangs back on the sidelines, or avoids them altogether. She never answers the phone.

“It creates a cycle of self-judgment,” she says, “and makes the anxiety worse.”

MDMA_image
Daniel Au Valencia participated in a pilot study examining the potential of MDMA as a treatment for social anxiety in autistic adults. (April Dembosky/KQED)

Experimental Study

Then last year Valencia heard about an unusual experimental study. Unlike a lot of other studies, this one didn’t say anything about trying to “cure autism.” This one was exploring a treatment specifically for social anxiety in autistic adults.

“Anxiety, unlike autism, is actually a problem that you might want to get rid of,” Valencia says.

Many traditional therapies don’t work for autistic people, says Nick Walker, an autistic advocate and consultant on the new study, because they reinforce stigma around autism and are “designed to coerce autistic people into acting like they’re not autistic.”

He sees this new research as a uniquely “culturally appropriate” approach to addressing the “epidemic” of social anxiety in autistic adults – anxiety caused by a lifetime of repeated, traumatic social interactions.

The treatment is MDMA, known more commonly as Ecstacy or Molly. On the street, it is often cut with speed or other drugs, and is popular among ravers for lowering inhibitions, heightening physical sensations, and making people feel all lovey.

But researchers are finding that pure MDMA has potential to be a true medicine. Early studies backed by MAPS, the Multidisciplinary Association of Psychedelic Studies based in Santa Cruz, show it can ease or erase symptoms of post-traumatic stress disorder. In one study, 83 percent of study participants treated with MDMA and psychotherapy were cured of their PTSD, compared to 25 percent who were cured from talk therapy alone.

“MDMA creates a sensation of feeling safe,” says psychologist Alicia Danforth, one of the researchers conducting the social anxiety study at UCLA’s Los Angeles Biomedical Research Institute, along with psychiatrist Charles Grob.

MDMA floods the brain with serotonin and dopamine, they say, and quiets the fear response from the amygdala, allowing people to confront past traumatic experiences without becoming overwhelmed. Or they can try new things without fear or inhibition getting in the way.

“It creates a practice environment to try different social skills out,” Danforth says. “MDMA can be a bit like training wheels for the psyche.”

Valencia is one of just 12 autistic adults participating in the pilot study. Given the small size, researchers won’t get statistically meaningful data on the efficacy of MDMA in treating social anxiety. Their focus is proving that this research can be done safely in this population, with the hopes that others will conduct larger-scale studies.

The treatment consists of two MDMA sessions, 10 a.m. to 6 p.m., six weeks apart. Danforth and Grob meet with each study participant several times before and after each session for psychotherapy and to measure their social anxiety levels.

Before the first MDMA session, they ask participants to set an intention. Danforth says they want them to think about how they hope to grow or change from the treatment.

“It can be something simple: ‘I want to be better at small talk, or I want to learn the skill of asking someone out on a date,’” Danforth says. “It can also be very large, ‘I’m working on forgiveness or unresolved grief or loss.’”

Valencia’s goal was to be more assertive.

“One of the things that makes anxiety go away is to be in control of the situation rather than waiting for things to happen,” she says.

The First Session

Valencia arrived at 10 a.m. for her first MDMA session at a bland office building on the UCLA campus. Researchers transformed the room to a kind of den that Danforth describes as “autism friendly” — soft lighting, soothing colors, and a luxury leather recliner facing a wall-sized poster of a forest canopy with light streaming through the trees.

New-age flute music played over the computer speakers as Valencia swallowed the MDMA capsule. Within a half hour, she knew it was not a placebo.

“I felt the changes in my body,” Valencia describes. “My bodily needs were radically altered.”

She describes one moment that was particularly powerful, when researchers brought in a plate of grapes.

“I bit into half a grape,” Valencia says. “I felt the flavors, the texture, the nuance.”

This sparked a classic psychedelic epiphany.

“Wow, I can really enjoy every bit of life more, if I can do it mindfully,” she says.

Later in the session, she felt a rush of energy in her body and said, “I feel like dancing.”

Then Valencia did something that would normally take her eons to build up the courage to do.

She asked Danforth if she would care to salsa.

“I was thinking, my intention is to be more assertive,” Valencia says. “Well, one part of being assertive is ask for what you want.”

Danforth says in the context of the therapy and Valencia’s intention, this was completely appropriate. It was in keeping with Danforth’s previous research, where she collected qualitative reports from autistic adults who had taken MDMA recreationally.

“We call them the Five C’s,” she says. “People reported changes in their level of courage or confidence, communication, feeling connected, a sense of communion or belonging, and mental clarity.”

Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few "make your own" cards.
Valencia uses emotion cards to help her understand and articulate her feelings. There are about 60 in the deck, including a few “make your own” cards. (April Dembosky/KQED)

Follow-Up

The day after the MDMA session, the researchers meet with each participant to talk about what happened. Then they call them every day for a week after that to check in.

“The treatment is just a day,” Danforth says. “It’s what you do with those insights and how you integrate it into your everyday life.”

After her first session, Valencia started using a deck of “emotion cards” each day to help her understand what she was feeling. Each card has a word – “peaceful,” “loving,” “uncomfortable,” “frustrated,” “receptive” — with a corresponding illustration.

“I’ve learned about the importance of connecting with your emotions,” she says. “I have learned that you can experience a whole lot of different emotions at once.”

While that may seem innate for a lot of typically developing individuals, it’s novel for a lot of autistic people, Danforth says. MDMA is known for helping people get clarity about their feeling states, to find words to express them, she says. That, in turn, helps people articulate their needs so they can “shape the world to be more to their liking.”

That was one of Valencia’s big takeaways: “Knowing that I have a choice,” she says. “Anytime something is bothering me, I can do something about it.”

The Second Session

When it was time for Valencia’s second MDMA session, she felt her original goal of being more assertive was now not quite right. It felt like a concession to societal pressure to fit in. She needed to let go of that, she says, and release the pressure she was putting on herself to always be involved, to be better all the time, to be different.

“In session number two, there was a moment I was just sitting in a big comfy chair,” Valencia says. “Letting my hands do whatever my hands wanted to do, kind of floating around. It looks like nothing is happening.”

But in fact, Valencia says, her mind was racing with thoughts, one idea popping up after another.

“And I thought, ‘Oh, these are some good ideas. I should write them down,” she says. “And then I stopped myself. ‘Do I have to do this? I can just sit here. And enjoy them.’”

When she flipped through the emotion cards, she picked one where the illustration was a swirl of blackness. The word was “depressed,” but Valencia says she saw something else.

“Not having to do something in every moment, not having to feel anything for just a couple hours,” she says. “That was such a relief.”

Reflections

Valencia completed the treatment last year. It’s impossible to draw a direct line between the treatment and how Valencia is doing right now, but she says she’s doing great. She’s got a steady full-time job, her own apartment, and she just got married. The study is still ongoing, so Valencia won’t know if her scores on the social anxiety tests improved until all participants finish the treatment and the researchers analyze the data.

But she says her biggest takeaway from the experiment is more about emotions than social anxiety.

She says she’s learned that there’s no such thing as good emotions or bad emotions.

“All emotions deserve to exist,” she says.

This underscores a process of transformation Valencia started a couple years before the MDMA treatment around her autistic identity. She started reading essays by Nick Walker, the autism advocate based in Berkeley. He rejects the notion that autism is a disease, the same way the gay community rejects the notion that homosexuality is a disease.

Walker says autistic brains are simply different. They’re part of the patchwork of neurodiversity in the human population.

“There’s the dominant belief in society that there’s good brains and bad brains,” Valencia says. “And from a neurodiversity perspective, all those concepts are no longer valid.”

After the MDMA treatment, Valencia  started to see emotions in the same way, along the same continuum of self-acceptance.

“Once you do away with that most basic of dichotomies, good versus bad, and just make it all sort of a jumbled mess of the same thing, then you can either hate yourself as a whole or you can accept and love yourself as a whole,” she says. “And I think, it’s not always as easy as making a decision, but it’s pretty obvious which one is preferable.”

Editor’s Note:

After completing the full course of MDMA treatment and working on assertiveness, Valencia began asking friends and acquaintances to use the pronouns “they, them, their.” Valencia identifies as gender-vague.

Using “they” or “them” to refer to an individual presents certain grammatical and syntactical challenges, and in light of this, Valencia asked KQED to use female pronouns instead.

Author

April Dembosky

April Dembosky is the health reporter for The California Report and KQED News. She covers health policy and public health, and has reported extensively on the economics of health care, the roll-out of the Affordable Care Act in California, mental health and end-of-life issues.

Her work is regularly rebroadcast on NPR and has been recognized with awards from the Society for Professional Journalists (for sports reporting), and the Association of Health Care Journalists (for a story about pediatric hospice). Her hour-long radio documentary about home funerals won the Best New Artist award from the Third Coast International Audio Festival in 2009.

April occasionally moonlights on the arts beat, covering music and dance. Her story about the first symphony orchestra at Burning Man won the award for Best Use of Sound from the Public Radio News Directors Inc.

Before joining KQED in 2013, April covered technology and Silicon Valley for The Financial Times, and freelanced for Marketplace and The New York Times. She is a graduate of the University of California at Berkeley Graduate School of Journalism and Smith College.

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