In a New York Times op-ed piece entitled “Why I Am More and More Ambivalent About My Autism Diagnosis,” Emma Camp points out that, thanks to social media platforms like Instagram and TikTok, conditions that were once “ones of which to be ashamed” have now become trendy. But the tale she tells is a cautionary one; her clear implication is that, at least on some level, stigma and shaming is preferable to people thinking that being autistic is cool. She warns that on social media, “anyone is as qualified to diagnose mental illness as a doctor.”
As a board-certified psychiatrist, I would venture that most anyone really could learn the things I’ve learned (and be spared the side effects I had from medical school: a nervous breakdown and six figures’ worth of debt). After all, it’s not brain surgery – it’s a rudimentary understanding of how the brain works. Furthermore, that understanding is far less crucial than a rudimentary understanding of how society works, and each individual’s own perspective of how their mind and body work. Because the manualized neuropsychological assessments (created and validated largely by white cis-gender heterosexual men) are extremely costly, even when “covered” by insurance, there is no question that official diagnosis is for the privileged (1). But Ms. Camp’s cautionary tale is in fact directed toward the privileged -- specifically “otherwise privileged young adults who yearn to be disadvantaged.” We see this as less of a problem and more of a catalyst, considering the multitude of other young adults who yearn for uprising.
“What makes us interesting and worthwhile people isn’t the circumstances of our birth,” she writes, “but the choices we make.” By “the circumstances of our birth,” Ms. Camp is referring to the #ActualAutism she had the $500 to prove she had. She makes no mention of any other circumstances of what we are born into that may or may not make us interesting and worthwhile people in the eyes of mainstream society. She speaks of “choices we make” as if choice is something everyone has.
To be clear, this is not an argument in favor of social media, necessarily. Rather, our argument is that the field of mental health, which at best offers difficult-to-access diagnostic and treatment services, and at worst functions as a continuum of the carceral state, has not earned the kind of reverence inherently imparted upon it by those who insist diagnosis and treatment should be left to the professionals. All praise goes to the people: how beautiful it is to witness suffering and curious people – strangers, no less – helping each other.
DIY mental healthcare did not start with TikTok. Here is a brief timeline, as we see it. Starting at the beginning:
The beginning of human civilization: Before capitalism monetized healthcare and began to explicitly distinguish the haves and the have-nots, mutual aid was all we had. Put simply, the earliest forms of mental health treatment were community members offering care to the most vulnerable. It is notable that the prognosis for meaningful recovery from schizophrenia (largely considered the most severe mental illness, with a prevalence of 1% literally everywhere on the globe) is actually better in developing countries than it is in the United States (2).
1935: A meeting in Akron, Ohio between Bill W. and Dr. Bob S. led to the birth of Alcoholics Anonymous. Almost a century later, AA and other 12-step fellowships, which do not involve clinicians (unless, of course, they are also addicts), are ubiquitous sources of mutual aid for those with substance use disorders. To accommodate agnostics and those with marginalized identities, hundreds of permutations are available online, such that almost anyone who is struggling with problematic substance use can access a safe space with empathic peers yearning to be of service. Recovery Dharma is another widespread mutual aid group that incorporates guided mindfulness meditation practice in every meeting. Harm reduction efforts have also been almost exclusively driven by mutual aid models (3).
Early 2000s: SAMHSA began to promote peer support as an evidence-based practice for those with severe mental illness. A “peer” is defined as a person with lived experience, generally a mental health diagnosis and/or substance use disorder, who offers various forms of social support to others struggling with the same condition. Peer mentoring and peer-led support groups offer people a level of empathy that most mental health professionals simply cannot. Informational support (sharing knowledge or training), instrumental support (concrete assistance to help others accomplish tasks), and affiliational support (building a sense of community) are all incorporated into the model. Peer support is now considered an indispensably important part of mental health treatment for this population (4).
Present day: Thanks to TikTok, anyone can learn about neurodivergence or how to recognize narcissistic traits in the person they’re dating. Additionally, those with severe mental illness and substance use disorders have mutual aid resources at their fingertips. However, those whose primary mental health issue is PTSD are still waiting (or avoiding, or both). In the spirit of do no harm, it is possible to differentiate between PTSD therapy techniques that may trigger distress, and those that soothe, regardless of how far along an individual is in their healing journey. To do so, it is helpful to view the range of PTSD treatment options in chronological context.
Early psychotherapeutic modalities for PTSD were focused on cognitive behavioral therapies, including prolonged exposure therapy and cognitive processing therapy (5). CBT was widely embraced by capitalism (short-term and manualized makes insurance companies happy). However, there are important drawbacks to consider. First, CBT cannot be readily individualized or tailored for neurodivergent folx. Second, clients must have clear memory of an isolated “index trauma” – combat veterans often fit this mold, but those with developmental trauma (e.g. childhood abuse/neglect) or those facing ongoing social oppression tend to dissociate as a defense mechanism, making memories foggy and non-specific. Finally, though we use terms like “cognitive distortions” and “cognitive restructuring,” CBT is low-key based on the therapist telling the client “your thoughts are wrong.”
Subsequently, dialectical Behavioral Therapy (DBT) was the first conventional psychotherapy to incorporate Buddhist teachings (“Eastern Medicine”), though it was made more palatable to Western Medicine by using the term “mindfulness” and omitting references to Buddhism or spirituality (6). Later iterations would incorporate self-compassion practices (Kristin Neff), Mindfulness-Based Stress Reduction (MBSR), and Acceptance and Commitment Therapy (ACT).
In 2014, Dr. Van Der Kolk published a book called The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma. This text was a game-changer of sorts, one that first articulated the neuroscience and physiology of how traumatic stress affects the body as a whole. The material applies to both combat trauma and developmental/systemic oppression trauma. Later paradigm shifts have introduced somatic experiencing therapy (SE), based on learning to recognize and reverse physical manifestations of traumatic stress (7), and internal family systems therapy (IFS), which focuses on healing and integrating parts of Self (8).
Meanwhile, a growing body of literature on traumatized people in the developing world supports the effectiveness of a three-session series called Narrative Exposure Therapy (NET), which has been found to reduce PTSD symptoms and improve overall well-being. Remarkably, the “solidarity workshop” model, where participants who complete the intervention are trained to facilitate future groups, eliminates the need for trained mental health professionals (9).
Today, Dr. Dunstan works primarily with clients who have marginalized identities, post-traumatic stress and Medicaid insurance plans, and she has found it almost impossible to find therapists trained in SE and/or IFS who accept Medicaid. Could the “active ingredients” of these treatments be disseminated in group workshop formats, facilitated by trained therapists or peer support specialists who assist community members in learning about key strategies and techniques to deepen their at-home/DIY healing practices? Consider, for example, a facilitated book club in which participants read Dr. Schwartz’s No Bad Parts (10) together while supporting each other’s self-examination, or a certified yoga teacher or meditation coach offering a workshop series to deepen participants’ daily healing practices. Additionally, radical mental health first aid workshops are emerging as alternative to relying on 911 for mental health crises.
Uncaged Minds is a 501(c)(3) organization that aims to offer tailored psychoeducational resources that can serve as frameworks for “DIY mental health care.” Our content is informed by professional expertise, lived experience, and our commitment to bearing witness and disseminating strategies for hope and healing. We propose the following algorithm to inform a menu of options:
- Miller L, Kaseda E, Koop J, et al.: Differential access to neuropsychological evaluation in children with perinatal complications or autism spectrum disorder: impact of sociodemographic factors. Clin Neuropsychol 2021; 35(5):988-1008
- Peritogiannis V, Gogou A, Samakouri M: Very long-term outcome of psychotic disorders. Int J Soc Psychiatry 2020; 66(7):633-641
- White W: Addiction recovery mutual aid groups in the United States: a chronology of founding. https://www.chestnut.org/resources/e084ee18-6966-4d41-aeb9-885e8b7dfd10/2022-Addiction-Recovery-Mutual-Aid-Groups.doc.pdf
- Chinman M, George P, Dougherty RH, et al.: Peer support services for individuals with severe mental illnesses: assessing the evidence. Psych Services 2014; 65(4):429-441
- Harvey AG, Bryant RA, Tarrier N: Cognitive behaviour therapy for posttraumatic stress disorder. Clinical Psychology Review 2003; 23(3):501-522
- Swales M, Heard HL, Williams JMG: Linehan’s Dialectical Behaviour Therapy (DBT) for borderline personality disorder: overview and adaptation. Journal of Mental Health 2000; 9(1):7-23
- Brom D, Stokar Y, Lawi C, et al.: Somatic experiencing for posttraumatic stress disorder: a randomized controlled outcome study. Journal of Traumatic Stress 2017; 30(3):304-312
- Hodgdon HB, Anderson FG, Southwell E, et al.: Internal family systems (IFS) therapy for posttraumatic stress disorder (PTSD) among survivors of multiple childhood trauma: a pilot effectiveness study. Journal of Aggression, Maltreatment & Trauma 2020; 31(1):22-43
- Robjant K, Fazel M: The emerging evidence for narrative exposure therapy: a review. Clinical Psychology Review 2010; 30(8):1030-1039
- Schwartz RC: No Bad Parts: Healing Trauma and Restoring Wholeness with the Internal Family Systems Model. Louisville, CO, Sounds True, 2010
- “Building Your At-Home Yoga Practice” and “Executive Functioning Skills for Neurodivergent Folx.”
- “Working with Parts” module (IFS).
- “Building Your Daily Meditation Practice” module.
- “Narrative Exposure Therapy” module.
- “Somatic Techniques” module.
- “Radical Mental Health First Aid” module.
- “Lifestyle, Liberated” module.
- “Plant Medicine/Psychedelics” module.