A Clinical Trial Is Exploring How MDMA Could Help People With Autism
A pilot study is investigating how the drug could affect social anxiety in autistic adults.
If you think the first time you tried MDMA was intense, imagine what it would feel like to take it for the first time as part of a clinical study—when you suffer from crippling social anxiety as a byproduct of autism.
It might not sound like the ideal setting for such an overwhelming drug, but this is exactly what researchers in California are doing at this very moment: investigating how MDMA could alleviate social anxiety and trauma in autistic adults.
"This is not about 'treating autism.' I am bored of sensationalist headlines that scream 'CAN ECSTASY CURE AUTISM,'" says psychologist Alicia Danforth, a researcher with the Los Angeles Biomedical Research Institute (LA Bio Med) and co-lead on the pilot study, which is backed by the Multidisciplinary Association for Psychedelic Studies (MAPS). The researchers are looking at treating social anxiety, and the lifetime trauma accrued from the stigma that comes with it, not autism itself.
Danforth is also slightly fatigued by alarmed people (often parents) telling her that suggesting MDMA be given to people with autism is dangerous—because much of the drive for the research came from the autistic community itself. "This was a collaboration that was informed from the bottom up," she tells me.
"It seemed natural to ask: what other populations, beyond people with PTSD, could we help with MDMA?"
One key player is Nick Walker, an autistic scholar, writer, speaker, publisher (and 6th degree black belt in Aikido) whom Danforth met through a mutual acquaintance.
"Nick began educating me about the common pitfalls of autism research, the importance of how language is used to discuss autism and individuals who are autistic, and he is outstanding at myth busting," says Danforth. MAPS went on to employ Walker as a paid consultant to help with risk mitigation, providing feedback, editing journal articles and "avoiding discussing autism or the research in ways that could inadvertently be harmful," as Danforth puts it.
Walker writes prolifically on what he calls "neurocosmopolitanism," the notion that the autistic brain is not diseased or deformed, but one of many commonplace variations on a spectrum of the human brain that also includes bipolar disorder and schizophrenia.
"The diversity of minds is subject to the same forms of oppression as other forms of diversity—and those whose minds are in the minority deserve liberation as much as any other minority group," he says.
Walker disagrees with those who worry that giving MDMA to people with autism could be hazardous. "MDMA was never harmful for me; drugs have been nothing but good to me," he says. "Taking MDMA had similar effects as tantric yoga—relaxing deep tensions, opening up and dearmouring."
It is this "dearmouring"—shedding chronic unconscious tensions—that he feels would be helpful for many other people with autism, who are united in having a heightened sensory experience of the world. "For some autistic people the world can be a very intense synaesthetic symphony that can require a lot of concentration and feel very difficult to manage," he explains. "When they do what they need to do to manage their experience, they get rejected and abused for being 'weird,' and that's traumatic."
Therapists from California to Israel, the UK and Canada are investigating how MDMA could be used to treat the most severe forms of trauma: rape victims, war vets and other survivors of post traumatic stress disorder (PTSD). Through therapeutic sessions using the drug as an aid, hundreds of people in a huge range of studies have found they could open up and explore painful memories that have been difficult to discuss otherwise.
"It seemed natural to then ask: what other populations, beyond people with PTSD, could we help with MDMA?" says psychiatrist Dr Charles Grob, who is co-leading the study with Danforth. "It made sense to look at the autistic community: many on the spectrum experience extreme bullying, and experience significant degrees of traumatization."
"I don't want to give the impression that we had a rave, but yes, there was some EDM involved"
Grob's name will ring bells for anyone familiar with modern medical psychedelic research (the legit kind, sanctioned by authorities, published in scientific journals). LSD for the pain of cluster headaches; ketamine for treatment-resistant depression; psilocybin for OCD. The list of conditions and treatments is long and dramatic.
MDMA entered the world of underground psychiatry in the 1980s, when hundreds of thousands of people took the drug in some form. It took a while for the therapeutic use of the drug to trickle up from the counter-culture—but it eventually did: Dr Grob led on the very first FDA-approved study with MDMA in 1993.
Danforth first worked in the field of psychedelic medicine when she assisted Grob administering psilocybin to terminally ill cancer patients to help them cope with the anxiety surrounding certain death. She was inspired to look for more stories from autistic people themselves that MDMA could be helpful.
The obvious place to look? The internet, said by some to be for the autistic community what sign language is for the deaf community. Previously isolated individuals—autistic or otherwise—can find like-minded people like never before. The wide availability of drugs, combined with anonymous forums and the long arm of the internet, led to a profusion in stories online about life-changing experiences with MDMA.
Take this 2007 testimony from a man with Asperger syndrome on psychedelic repository Erowid:
"MDMA changed my life … [But] it's not a miracle drug for me. Although the experience itself is great, it's the insight it has given me into my feelings and the feelings of people around me that created the lasting changes. The barriers it breaks down have proven quite permanent for me. [MDMA] certainly has shown me things nothing or nobody could have shown me otherwise."
Surveying autistic people for her PhD dissertation, she found that "72 percent of MDMA/ecstasy-experienced people reported 'more comfort in social settings,'" and 12 percent said that the beneficial impacts lasted for two or more years.
Now, being able to give the drug herself to autistic subjects in a controlled, monitored, safe environment, she and Grob have seen some dramatic experiences. A few people who had never been on a date before have since gone on one—even two—romantic outings. Others, who had never understood dancing, suddenly felt the desire to get up and dance right there in the lab. "I don't want to give the impression that we had a rave, but yes, there was some EDM involved," says Danforth.
The study doesn't involve regular MDMA doses or "prescribed" MDMA to take home. Rather, participants take the drug twice in a therapeutic setting, complete with all the normal paraphernalia of a psychologist's treatment room, from card games to art supplies and headphones "for introspection."
But, like all things in medicine, everybody is different, and nothing is a cure-all. "It's important to avoid being swept up in the success stories," says Danforth. "It is well known that some individuals don't respond to MDMA in the same way most people do. Some people have the classic MDMA love puddle response—but others will feel like they have just had a strong cup of coffee. Let me be clear: MDMA is not for every individual."
"They took the thing my brain is inherently the worst at, and asked me to do a lot of it while on MDMA"
It proved not to be for Jackson Truax, a 28-year-old with Asperger's syndrome who was the very first person enrolled in the MAPS study. Turns out, Jackson did not have your typical MDMA experience. "Did MDMA improve my ability to deal with social anxiety?" he says. "The one word answer would be no—I mostly just felt very tired."
In fact, his first trip was outright bad. He had been tasked with performing a "social inference test": spending half an hour watching a series of 10-20 second videos of actors playing out a variety of social situations. It was his task to "identify their intentions."
"Essentially they took the thing my brain is inherently the worst at, and asked me to do a lot of it while on MDMA," he says. "It just felt like my brain was getting hit with a hammer, it was a very intense and high pressure situation. I wound up having a total autistic meltdown. I had to ask Alicia and Dr. Grob to leave the room, and it was my support partner [a friend enrolled in the therapy process to be a sober chaperone] needed to come into the room. She and I spent some time alone together with her calming me down."
In sum, he didn't enjoy the drug in the slightest—and if anything it made him more anxious (having to go off his medical marijuana for a while probably didn't help). Yet he does feel the study overall was beneficial. "Even though it was a bad trip and a painful experience that brought up a lot of stuff, it felt natural to move forward. It made it easier to just be ok with it and move on," he says. "This was definitely a net gain. This was a world-class facility where I had access to people and experiences I wouldn't otherwise have had. This gave me a greater vernacular to talk about autism spectrum and social anxiety—I gained new prisms to understand things."
Which is ultimately what the study is about: the mind, not the drug.
"The critical distinction is that these are not drug studies," says Danforth. "Other than safety considerations, the pharmacological drug effects are irrelevant: this is about the therapeutic effects of an altered state of consciousness."
Lit Up is a series about heightening—and dulling—our sense of perception. Follow along here.
Correction: Some factual errors appeared in the original version of this article. We regret the errors and the following have been amended: The trial did not take place in a hospital setting but in a specifically prepared quiet room and Alicia Danforth is a psychologist, not a registered psychologist; Nick Walker was paid as a consultant by MAPS, not LA BioMed; Jackson Truax was not required to go 'cold turkey' off medical cannabis but to taper off use for the trial, and had an untypical response to MDMA but was not clinically a non-responder.
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