[Interview] Alicia Danforth: Helping autistic adults navigate the social world with MDMA-assisted therapy
Research with autistic children and teens was a promising and controversial research area during the first wave of research with psychedelic substances. The first investigator to pick up this thread again in the current era was Alicia Danforth. She currently studies the effects of MDMA-assisted therapy on social anxiety in adults on the autism spectrum in a study led by Charles Grob.
How did you begin doing this work?
It’s not a typical story. I made a mid-career transition. When I was working as a project manager in software development, I was out with co-workers one night, and they were talking about doing ecstasy at raves. I was intrigued, because the ones who had already done it spoke about it so favourably. But it also made me nervous, because I had been exposed to all the propaganda, and I thought that maybe my programmers were going to destroy their brains. It was important for me to research ecstasy and be able to let them know why they should not be doing it. So I got a copy of Julie Holland’s book, Ecstasy: The Complete Guide. I had a transformational moment when I read the testimonies written by young men who she identified as having had a schizophrenia diagnosis. They talked about what their experiences with ecstasy had done for them, how it gave them hope, how it helped them feel that they might be able to have an experience of connecting to others and feeling more normal. Something that was dormant in me became fully awake in that moment. I could not accept that a substance that millions of people have used and that has helped so many of them who don’t have other effective support and treatment was illegal and could not be studied by researchers in reputable institutions.
So I called Dr. Holland and told her that I wanted to help educate people and promote scientific inquiry. She directed me to Rick Doblin at MAPS, who referred me to Dr. Charles Grob at the Los Angeles Biomedical Research Institute at the Harbor-UCLA Medical Center. It was one of these synchronous life events, because I had just taken a job a mile or so away from Dr. Grob’s office, and he was doing end-of-life anxiety research with psilocybin at the time. I approached him as somebody with no qualifications whatsoever, just to help out as a volunteer, to support what he was doing. We considered options and discovered that I could help him with PowerPoint presentations. In an age where people gave their presentations on their laptops, he was still using a 35mm slide carousel…! Working for him gave me an opportunity to immerse myself in the literature, in the history and in the science, and at every step I became more intrigued and inspired to do more. After about two years, his research assistant on the psilocybin study needed to relocate, and they had a staffing gap. They thought they might have to stop the study, because they didn’t have anybody else available, until Rick suggested hiring me as a study coordinator. By that time, I had acquired some experience working in harm reduction at Burning Man and similar events, where I was providing volunteer peer support for people having distressing experiences with altered states, and I had discovered that I had the temperament for the work. I had been in some extreme situations, I could handle freakouts. I had been a journalist before, interviewing people about their stories, listening to people describe their life experience, and as a project manager I was good with budgets, schedules, resourcing, and task lists. Everything combined, it became apparent that I could be a good fit for the research team. I couldn’t provide any psychotherapy during that study, because I wasn’t trained as a therapist, so I refrained from doing anything that I wasn’t qualified to do.
I think the most valuable and essential factor that I brought to the team was that I was female, because the other two facilitators were male, and it’s important to have adequate gender balance. People near death frequently yearn for a mother figure. I also did various things like setting up the room in advance, bringing in flowers, decorating, helping create that sense of comfort and safety, attending to things like hydration. I got trained in using the machine that monitored vital signs. I would provide active listening, or a hand to hold or a light meal, taking a lot of session notes and things like that… but I did not provide psychotherapy.
After that psilocybin study with Charles Grob, you went on to study psychology at the Institute of Transpersonal Psychology, where you wrote your dissertation on ecstasy use in adults on the autism spectrum. Where did your initial interest in autism come from?
Five months after I started on the psilocybin study, I was diagnosed with breast cancer. My cancer was aggressive, but I caught it before it metastasised. But that brush with death brought up all sorts of existential issues for me. I figured that if I lived, I was going to become a licensed psychologist and do what I could to continue contributing to psychedelic science. I actually brought homework to the haematology lab and studied with an IV in my arm. It was motivating! I was in my early forties at the time, and I chose the Institute of Transpersonal Psychology because of Stan Grof’s affiliation with the origins of transpersonal psychology and because some of the core faculty there had been involved in the first wave of psychedelic research. If I were younger, I would have gone to a much larger, more prestigious APA-credited school. When younger people ask me what recommendations I have, I say: go to the best school and get the most solid credentials that you can. But at my advanced age as a student, I needed to land where I could write the dissertation I intended to write. And getting a transpersonal education was valuable for the clinical work I’m doing now with non-ordinary states of consciousness.
As for my interest in autism… Around the time I started volunteering for Dr. Grob, he invited me to attend a salon for people with an interest in psychedelics science. It took place once a month, and all sorts of chemists, and activists, and people with various other backgrounds came. At my first meeting, I met Gary Fisher. He was a psychologist in California who had worked in the sixties with children on the autism spectrum with LSD and psilocybin. His work fascinated me. He was a very warm, engaging, and creative person. That encounter planted the seed. Then, when it came time to determine my dissertation topic, I just knew at that point that I didn’t want to focus on cancer in any way, I didn’t even want to hear the word anymore at that point nearing the end of my own treatment. I reflected deeply on which other populations were underserved, grappled with difficult to treat mental health issues, and had no effective treatment options. In one of these reverie moments, I thought: What happens when people with an Asperger’s diagnosis take ecstasy? It seemed like this big revelation at the time, but when you think about it, it’s kind of an obvious question.
The Internet had become a major hub of a diverse and growing autism community, so I took a look at what people were saying on the web. One of the first accounts I read was about a young man who had put two and two together, and tried ecstasy to help him with his social challenges. He intentionally went to a party, took the ecstasy and was having a great time. But then everybody started getting drunk and sloppy, and he wasn’t comfortable with this chaos, so he went to a night club. When it closed, he was so deflated that he went out into the street at night, just hoping to connect with someone. And there again, I had a moment when my heart was responding to an account of someone’s pain that seemed unnecessary: why is this young man, who only wants human connection, reduced to roaming the streets at night? This is just flat out wrong. As a society, we need to know more about how to respond and support people who want to connect but lack the skills to do that naturally. So I decided to give it my best effort to try to build bridges in autism communities and learn all I could so I could interview people with a reasonable degree of certainty that they were telling me the truth. As a first step, I decided to do an inductive, mixed methods study with an emphasis on qualitative data. I learned from autistic adults what they struggle with and what they want. Then, I documented what they shared as objectively as I could by applying the Thematic Content Analysis method.
What did you learn?
The qualitative data summaries are very interesting to read. I made graphs to show the high percentages of people who said things like: “I’m more at ease in social settings”, or, “I’m better able to express my emotions”. Some of the tables look a little too good to be true. The data are reported accurately, but due in part to self-selection bias, individuals who had positive experiences are more likely to report. I had concerns that negative experiences might be underreported. I would leave out some of the questions about favourable effects and try to get more information about the negative experiences to maintain a balanced account. However, there simply was only a small percentage of negative reports.
Some individuals are clearly non-responders. We’ve seen that in clinical research, and there are theories about different enzymes and genes affecting metabolism. As more research is accumulated, I think there will be some determinable percentage of people who are atypical metabolisers, maybe around 10-15%. For example, they are the type who will do MDMA from the same batch as a group of others, but when everybody is cuddled up in a love puddle, they might feel as if they had a strong cup of coffee without the strong empathogenic effects. When you talk to these individuals, they’ll often say that they need to receive higher doses of anaesthetics or have other atypical responses to medications.
The themes that emerged from the – mainly qualitative – dissertation research data clustered around five constellations, I call them the “five C’s” as a memory aid. The types of changes reported were often around courage (or confidence), that’s the first C. I like to use a Wizard of Oz analogy. That change can be like the Cowardly Lion finding his courage: as if you had your courage, but were somehow detached from it, and now you own it and can use it again. You feel that increase in courage in an embodied sense: “I was brave”, “I could dance”, “I could flirt”, “I could say what I was always afraid to say”, or “I could call people to initiate something social”. The next C is communication: After Dorothy and the scarecrow oiled the Tin Man, he could gesture and speak more freely. There’s an increased ease in communication and a better ability to listen. A lot of people said they felt as if they could interpret body language or as if they could participate better in non-verbal means of communication. Another C is connection: such as connections with family members, understanding and relating to people they have significant connections to differently, being more open to physical intimacy, or feeling connected in a group instead of feeling so isolated. More than one individual has described this newfound sense of connection as being similar to how the Tin Man becomes aware of his heart that was always there. The fourth C: beyond connection there can be a sense of communion, that sort of deep sharing, maybe with some spiritual overtones. Feeling a part of something larger, unitive consciousness or some peak experience of feeling deep empathy. The final C was the most surprising finding: clarity (or calm). Clarity of mental and emotional processes. This effect was something that seemed more unique to this population, in comparison to neurotypical reports . A lot of interviewees made statements such as, “My brain was quiet for the first time in my life.” Or: “I could focus on one thing at a time”. “My inner world was clear”. “I had laser focus, my thoughts straightened out”. This last theme was the one that stood out for me, the one I wasn’t expecting based on prior accounts I had read.
Isn’t it difficult for autistic people to break the law by using MDMA, which is illegal? Isn’t that a barrier for them?
Autistic adults are such a heterogeneous population, everybody is so unique, that I tend to not think in stereotypes anymore. Yes, if you imagine a pie chart representing all autistic adults, there is a certain large segment who prefer to follow the rules in most instances. Another, related segment is made up of people who identify strongly with their cognition, their thoughts are, in a sense, the Self for them. So the idea of doing anything that might alter or impair cognitive processes is a deterrent. But those boundaries don’t apply to everybody. There are a lot of people on the spectrum who are paying attention to the science. For instance, when I was asking them about the quality of the MDMA they ingested, I was surprised at how many of the younger respondents said that they used the Marquee Reagent uptake test. They were very savvy. So science is science, and if the data are telling a different story, then they’re going to go with the facts. Also, enough people are having their own real-world experiences that influence how they’re thinking about MDMA. They may see friends who had a wonderful experience and were changed after that. Some people go for it, some people refrain.
On to your own clinical study, that was supported by this dissertation. You’re studying the effects of MDMA-assisted therapy on social anxiety in autistic adults. Why can’t these people be helped by other, more conventional methods – especially for social anxiety, for which there are many medicines?
There is some research literature that suggests that the receptors for benzodiazepines, for example, respond atypically in autistic brains. There are structural brain differences, and there’s no such thing as a uniform autistic brain. And it makes sense, if you slow down and think about it: conventional psychodynamic therapy has not shown to be particularly effective for people on the spectrum. Unfortunately, historically the blame has been put on the autistic clients, assuming that they can’t relate or express themselves. But I’ve come to shift my focus to the clinicians who have not invested the effort it takes to learn about or really appreciate what it’s like to be autistic. So I’ve come to think of the barriers to therapy as mutual challenges with understanding. Speaking in broad stereotypes, a lot of autistic clients are very pragmatic. They want tools to address a problem they have in the here and now. They might be less interested in talking about what happened to them when they were five, at least not initially. This process of working with archetypes and analogies and metaphorical concepts may not be as effective for them. There may be challenges going both ways with establishing an essential, empathic therapeutic rapport.
In our study, we’re using psychoeducation in mindfulness skills, based on dialectical behavioural therapy (DBT), developed by Marsha Linehan. DBT was developed to promote effectiveness in interpersonal relationships, emotion regulation and distress tolerance, which are social adaptability skills that are often challenging for adults on the spectrum, so we thought this type of therapy would be a good fit. It’s so fundamental, and it’s helpful across so many domains. We’ve adapted the mindfulness module, and applied it in a research setting, because it’s a practical life skill. There are data that show mindfulness therapies are effective for individuals on the spectrum, and it creates a vocabulary that we can use during sessions to help them navigate altered states, so that when they are in a state of consciousness that’s ineffable, or they’re experiencing the novel states of mind for the first time, we can continue dialoguing with them by asking questions like: “What is your reasonable mind doing now? And describe what the emotional mind is doing. If you don’t know what to do right now, just observe your experience. And when you’re ready, describe what you observe”. All of our study participants are MDMA-naive, and we’re seeing indications that mindfulness concepts can help them navigate the MDMA experience, especially the first time.
Regarding neuropsychology, some of the most promising recent findings are about GABA receptors. Whereas dopamine is similar to the gas pedal on a car that revs things up, GABA is like a brake pedal that quiets things down. Recent research findings have suggested that autistic brains have the same amount of GABA available as typically developing brains, but the receptors work differently, so the brake pedal isn’t as easy to apply. This makes it more difficult to filter out extraneous sensory input, to focus. Just adding GABA doesn’t help, because the difference is not related to amount, but to utilisation. I think the GABA research might someday be shown to be relevant to why MDMA might be helpful for autistic brains in ways that are unique to that population, but much more research is required first.
You mentioned Gary Fisher before. How do you view the whole body of research with autistic children and teens from the sixties, and what did you learn from it?
I learned that the methodology would never be approved today. Some of the studies were horrifying! They would take very young, non-speaking children, put them in a room, and look at them through a one-way mirror after giving them large doses. They could not provide informed consent, they could not verbalise their experiences, they couldn’t ask for help. So I don’t advocate replicating those studies.
However, when you look at the aggregated data, there were more positive outcomes than adverse responses, and that was reflected in behaviours that were reported: smiling, laughing, gazing, seeking physical contact, initiating play. In fact, for most populations, set and setting are going to have an influence on outcomes: some people are going to have a difficult experience with larger doses no matter what you do, and some people a going to experience euphoric states. Gary Fisher was trained in classical psychoanalysis and psychodynamic approaches. He had his research staff take LSD as part of their training, in order to bond as a team, and to be able to have more empathic resonance with the study participants. He took a much more humanistic, psychodynamic approach as opposed to the classic medical model of monitoring parameters and behaviours. He saw the importance of supportive psychotherapy and forging therapeutic relationships between facilitators and subjects.
MDMA was never used in the first wave of psychedelic research. Why did you choose MDMA over any other, more ‘classic’, psychedelic?
Because of MDMA’s reputation for having prosocial effects in clinical and non-clinical settings. Before starting my psychology training, I mistakenly believed that individuals with an Asperger’s diagnosis could not experience empathy because that’s what I was taught. That incorrect assumption was kind of a catalyst, but I’ve changed my thinking about autism and empathy. Empathy is a broad umbrella term that covers many domains of human cognitive and affective experience. These days, I’m interested in Markram and Markram’s research about the Intense World Theory. In some instances, there may be an overpresence of some aspects of empathy with autism. I can tell you, from establishing connections with autistic adults, that many of them are quite empathic. Often they’re challenged because they feel too much. For others, it’s difficult to understand what someone else might be thinking or feeling, but if someone they care about is hurting, they hurt, or if someone else’s inner experience is explained to them, they can care about what someone else is feeling. In some cases, they’re less likely to pick up on subtle, non-verbal cues. So there’s a broad spectrum of ways people experience empathy, and I’m not on a crusade to implant empathy with a pill. But there are also other ways in which MDMA-assisted therapy might be supportive. For example, experiencing the pleasant sensations of being touched, which can be a challenging area for a lot of people on the spectrum, or being better able to express oneself verbally, especially about affective states. Findings from other studies indicate that MDMA has multiple effects that might be helpful. So let’s apply the scientific method, collaborate with autism communities, and find out if that’s the case for autistic adults or not.
Almost all the participants have been treated now. Can you give us some preliminary results?
Because it’s a small safety and feasibility pilot study and because it’s a sponsored study, the sponsor [fusion_builder_container hundred_percent=”yes” overflow=”visible”][fusion_builder_row][fusion_builder_column type=”1_1″ background_position=”left top” background_color=”” border_size=”” border_color=”” border_style=”solid” spacing=”yes” background_image=”” background_repeat=”no-repeat” padding=”” margin_top=”0px” margin_bottom=”0px” class=”” id=”” animation_type=”” animation_speed=”0.3″ animation_direction=”left” hide_on_mobile=”no” center_content=”no” min_height=”none”][MAPS, ed.] has an obligation to monitor early outcomes to determine if we’re doing any harm. Looking at the outcomes from early participants, the data were suggesting that we could continue safely and that early trends were towards positive outcomes. That’s really all I know, however, because the researchers are still blinded to the primary outcome measure scores. We do monitor some of the other assessments. For safety reasons, we review secondary outcome measures for conditions such as mood, stress, and anxiety. We’re also looking at factors such as self-esteem, alexithymia (the inability to identify emotions or express them in words), emotion regulation, emotion expression,… There may be outcomes other than social anxiety scores that support future studies, at least we hope so. But that’s all I can say for now, unfortunately.
What’s your general impression of how the sessions went?
Generally, the completed sessions have gone very well. We have had no serious adverse events, and no events requiring any medical intervention. The heart rate and blood pressure measurements have never been alarming. An important thing to understand is that we’re working in lower dose ranges, in part because some of the input from the dissertation research suggested that at least some individuals on the autism spectrum may be more sensitive to the effects of MDMA, and higher doses might be too stimulating and induce stress. This is a dose-finding study, so we don’t make the assumption that what’s optimal for a typically developing brain is best for an autistic-style brain. The first group of six subjects got 75mg with an escalation to 100mg, and the second group of six subjects started at 100mg, and if they tolerated that well, they went up to 125mg. Everyone has been able to tolerate the escalation, and nobody had the type of distressing medically adverse experience that would prevent us from raising the dose.
Overall, what we’ve observed has been positive and encouraging so far. The responses span a broad range, from individuals who have a “non-responder” minimal kind of reaction, to others who have had more transformative experiences. It’s possible that some subjects might respond positively to placebo because they have not had prior psychotherapeutic help. We unblind at six months for this study, to determine who’s eligible to go on to Stage 2, so I do know in some, but not all, instances who got placebo and who got MDMA, and we’ve seen a broad range of responses. So it all comes down to the data. We’ll have most of our initial outcome data for Stage 1 in August of 2016. As for publication, my best guess would be early 2017 at the earliest.
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