Mad Pride and Neurodiversity

My first encounter with the notion of recovery came as I glanced through a book covering mental health in the aftermath of my hospitalization. I was an adolescent. As I read the words, it came across as a way to suggest that people with mental health conditions could reform and become normal again—to recover. On one hand, I longed for life before my diagnosis. On the other, my diagnosis felt like part of me and not something I could recover from.

When I came across the movement in real life through a mental health conference, the message was quite different. An aspect of my interactions involved celebrating the achievements people made in fighting for their mental health, just as we celebrate the achievements people made in fighting for their physical health. I got a sense that I could live a good life with my diagnosis and that the diagnosis was nothing to be ashamed of.

I felt that I did not have to rid myself of it; as ignorant as it may sound, it was a somewhat new idea to me that I could be an acceptable person with this diagnosis. As a neurodivergent person who also has mental health conditions, this felt especially empowering. This is Mad Pride.

Years later, as a clinician, I have seen similar messages reflected in the neurodiversity movement—a focus on acceptance, advocacy, voice, and a world that accommodates differences. Yet, it seems these initiatives have been kept largely separate.

Before I proceed, I want to give a word of caution: What I share here is a snapshot of two immensely diverse cultures with many subcultures within them. I speak only of my own observations, recognizing that these are unlikely to align with everyone within each group.

The Recovery and Mad Pride Movements

Back in the 1970s, and the decades prior, mental health treatment often represented a coercive force. A diagnosis of a serious mental illness could leave someone's voice muted in favor of the professionals making those diagnoses. With interventions like seclusion, restraint, and sedation, treatment tended to focus on subduing the person as much as the illness. Often, individuals with the most severe diagnoses, such as schizophrenia, were excluded from psychotherapy or person-centered planning. Expectations were low.

The mental health recovery movement rose in opposition, offering a clear message that people do recover from mental illness. Recovery can be defined as getting back on track and moving toward one's personally defined goals. Freedom from symptoms could be part of that, but more often recovery keys in on social aspects like rebuilding a community. The Mad Pride movement gave voice and created communities of support for a marginalized group that often had support needs left unmet or taken advantage of.

Integration of peer support specialists as part of mental health staffs, the involvement of client voices in treatment plans, and the decreased use of coercive practices such as restraint are among the changes that resulted from this humanitarian movement. The Mad Pride movement has also been involved in the creation of networks of mutual support such as warm lines, respite houses, and peer-support groups where individuals living with mental health conditions can gather together.

Today, the recovery movement is diverse. Much of it rides alongside the traditional mental health system although some have created alternative systems of mutual support. Sections of the movement, specifically the ex-consumer/survivor faction, take this a step further with a hypothesis that what we call mental illness is an understandable reaction to a mad world and the trauma that comes with it. This has been controversial, particularly from the lens of family members and professionals who understandably express concern about individuals' ability to elect for treatment amid severe mental illness. Still, holding value to mental health treatment is not at all incompatible with the mission of a recovery focus. Most identify the reality of suffering that can come with a mental health condition and the relief some experience from quality mental health care.

Neurodiversity

Neurodiversity initiatives have been more recent, tracing back to the early 1990s. Similar to the mental health recovery movement, the neurodiversity movement has fought for individuals' voices in the interventions given to people who have been diagnosed with neurodevelopmental disorders like autism and attention-deficit/hyperactivity disorder (ADHD). This movement advocates that these are differences in brain wiring rather than pure deficits. While support needs may exist, that support must be consensual.

There has been an unfortunate history in the field of developmental therapy of coercive practices, minimization of client voices, and paternalism. Also, from a deficit perspective, there has been a trend of pushing neurotypical norms onto individuals whose brains are not wired for such, leading to low self-worth, masking, and trauma. For example, a common misconception about autism that permeated the field for some time was that autistic people lacked empathy. Popular interventions focused on behaviors and, often, the happiness of the persons around the neurodivergent person rather than the neurodivergent person themself.

The neurodiversity movement postulates that any support given to neurodivergent people must be informed by the experience of neurodivergence. Lifting neurodivergent voices to help clinicians and educators understand the lived experience portion while also preserving respect for aspects of self that do not need to change is key. In particular, there has been a focus on seeing the individual rather than the behavior and celebrating the diverse ways people think and experience the world. Rather than getting rid of things like autism and ADHD, neurodiversity advocates often encourage understanding the innovation these individuals bring forth while accommodating the challenges they may experience interacting in a mostly neurotypical world.

The neurodiversity movement has provided a sense of community to individuals who have often experienced rejection and exclusion—much like what the recovery movement has offered individuals with mental health conditions.

Intersections

The overlap between neurodivergence and mental health diagnoses is huge. More than 50 percent of people with ADHD (Mak et al., 2022), 85.7 percent of people with Tourette syndrome (Hirschtritt et al., 2015), and 92 percent of people with autism (Brookman-Frazee, et al, 2018) meet the criteria for another Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, diagnosis. Neurodivergent individuals are at higher risk of not receiving the optimal treatment within the mental health system.

I spoke with Amy, an advocate and certified recovery support specialist who identifies both as a neurodivergent person and a person in mental health recovery. She shares "It's a great time to be a neurodivergent person, we've never had any of this." Amy shares about shared decision-making and particularly the support that those with lived experiences can provide to parents navigating these pieces.

She goes on to say "the neurodivergent community does not have a whole lot of representation in the peer support world" sharing about how supports are often categorized by disability leaving many individuals are sometimes excluded due to not fitting perfectly into one category. She shares, "I'm doing a lot of advocacy behind the scenes."

Through embracing and learning from shared experiences, the mental health recovery and neurodiversity movements could do well to address these intersections. Both perspectives can be deeply validating. While there are some differences, the two have much more in common.