Neurodiversity affirming practice and mental health

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There is a mental health crisis among autistic people. A meta-analysis reviewing close to 100 studies revealed that most psychiatric conditions are significantly more prevalent in autistic individuals (Lai et al., 2019). Traditionally, the medical model has pathologised autism as a disorder needing a cure. In contrast, the neurodiversity-affirming movement, underpinned by the social model of disability, challenges this viewpoint by viewing autism as a natural variation of the human brain. This post aims to demonstrate why shifting our approach to autism toward a neurodiversity-affirming perspective is vital in addressing the mental health crisis autistic people face.

The mental health crisis among autistic individuals is marked by significantly higher rates of psychiatric conditions compared to the general population. Research indicates a stark prevalence of anxiety, depression, and suicidal ideation among autistic people. Autistic individuals are nine times more likely to experience suicidal ideation (Cassidy et al., 2014), and the mortality rate is 2.56 times higher across all causes of death for autistic individuals (Hirvikoski et al., 2016). Contributing to this crisis are systemic barriers to health care access, including diagnosis challenges and a lack of inclusive, adaptable services that meet the unique needs of autistic individuals, particularly for those with co-morbid diagnoses or from culturally diverse backgrounds (Malik-Soni et al., 2022). These barriers exacerbate the risk of psychiatric illnesses and compound the mental health crisis for autistic people.

Medical Model Versus Neurodiversity-Affirming Practice
Within the medical model framework, the approach to treatment for autistic individuals has focused on reducing symptom severity. However, research has highlighted that depression symptom severity, not the severity of autistic traits, was the most reliable predictor of quality of life for autistic people (Oakley et al., 2021).

We must move away from focusing on reducing "symptoms" of autism to understanding what it means to live meaningfully for autistic people.

Neurodiversity-affirming practice, at its essence, is about person-centred and strengths-based care.

It is crucial to acknowledge that the neurodiversity-affirming movement does not intend to diminish the challenges faced by autistic people or their necessity for services and support. It does not seek to negate the reality that autism is a disability, which is in itself a neutral term. The label "disorder" insinuates an inherent flaw or pathology, potentially leading to stigma and an emphasis on interventions that seek to "cure" or "treat" autism. Considering autism is a difference in neurological makeup and cannot be cured, one may argue what the value is in pathologising this form of diversity.

Autism, like other neurological differences, is still considered a disability because autistic people experience challenges in social communication and sensory processing (amongst other things) that make it difficult to navigate the world. However, by embracing a neurodiversity-affirming perspective, we can appreciate that the difficulties autistic people face are further compounded by the person/environment mismatch.

The ethical principle of "do no harm" is foundational in psychology, and, therefore, providing neurodiversity-affirming care is arguably an ethical imperative. Given what the research has indicated about the mental health crisis faced by autistic people, it demands a shift in approach. The approach to care for autistic people has not been working in a way that contributes meaningfully to the quality of life of autistic people. It has failed them, and the evidence is in the statistics. To address this crisis, we must strive to understand the autistic experience and how we can reduce the barriers they face to accessing care.

The label "disorder" insinuates an inherent flaw or pathology, potentially leading to stigma and an emphasis on interventions that seek to "cure" or "treat" autism. Considering autism is a difference in neurological makeup and cannot be cured, one may argue what the value is in pathologising this form of diversity.

One of the most impacting research studies I have read about autism is called Death by Suicide Among People With Autism: Beyond Zebrafish by South et al. In this study, researchers found that adults with ASD have three times the suicide rate of the neurotypical population. For women with autism, the suicide rate is four times that of the neurotypical population. Those with other co-occurring mental health issues have a 92% higher suicide rate than those without autism—and over 50% of autistic adults have co-occurring conditions. What all this means is that surviving as an autistic adult in a neurotypical society is a Herculean task.

Many neurotypical researchers have hypothesized as to why so many of us die by suicide. In South et. Al’s study, the team found that masking and camouflaging behaviors are a major contributor.

High rates of trauma associated with social naivete and increased victimization have also been linked to an increased likelihood of death by suicide. However, as an autistic adult who spends most of their life working with other autistic adults as a therapist, I feel this doesn’t really touch the depth of the problem.

I am always overwhelmed by the neurotypical world and its pressures and expectations. When I go to the grocery store, the volume of people, the lights, the music, the vastness of the choices, and the constant rearranging of the shelves all contribute to a cyclone of unpredictable overwhelm that drives me away very quickly. I can work for 60 hours a week if it is a task I am hyper-fixated on and good at, but if you throw in some extra variables that aren’t rational or are chaotic, I am quickly overwhelmed. I forget things, I drop balls, I make mistakes, and people are always mad at me when I am overwhelmed. All of this remains true even though I have the most ideal work environment and most supportive home life imaginable for an autistic adult.

A study by Schwartzmann and Corbett (2021), discussed the well-documented fact that autistic adults struggle with obtaining and maintaining employment. Many autistic adults struggle to keep jobs beyond two years even when they are qualified. Meaningful employment is important to the mental health of autistic adults, and so is a stable income, but it is elusive for most of us. If I didn’t run my own practice, I believe I would be unemployable. I am not good at networking with neurotypical coworkers. I am not good at communication and I loathe teamwork in all its forms. At the last job I worked at before opening my own practice, the clinic doctor wrote “ding dong the witch is dead” on my door the day before I left. I never fully understood why he hated me so much, but I know enough to understand that I am often hated by neurotypical colleagues.

In a world in which autistic adults are constantly overwhelmed, rejected, and victimized, it isn’t surprising that we dance with daydreams of suicide regularly. Yet, I think it goes even deeper than that. The more I talk in support groups and therapy with other autistic adults, the more I realize that if our support needs were met, autistic adults might find lives that didn’t make them daydream about dying. They could find lives of meaning that they enjoy.

For many of my autistic peers and clients and me, I have found that much of the suicidality is linked to being overwhelmed. I spent many of my early years daydreaming of death and it wasn’t until the last several years that I realized it wasn’t really death I craved; what I craved were quiet and understanding. When I am overwhelmed and close to meltdown, I will reach for anything that will make the loudness and brightness of the neurotypical world quiet. Ideally, I would like time off and a quiet place, but neurotypical work environments, peers, and family members are almost never willing to offer these supports.

I find that this is a hard concept for most neurotypicals to understand. It is hard to explain to neurotypicals how overwhelming the world is for autistic people. Neurological studies of autistic people show that we have something called hyperconnectivity: atypically high whole-brain activity and connectivity between neurons. For us, this feels like we always have every window in the browser open, each with music playing, and we can never shut it off.

How can we use this information to reduce suicidality in autistic adults? We need to create workplaces with fewer social demands that allow autistic adults to have flex time and quiet spaces. Allow autistic people to work and live in their own ways even if it is weird or different. Currently, I am a happy, thriving autistic adult and I find that what most autistic adults who are thriving have in common is environments that support neurodiversity. I can work for 80 hours a week for 2 weeks and then take one week off. I can find quiet space in my home and work environment when I am overwhelmed. I am comfortable bringing my service dog to the places where I need him. The others in our autistic adult group who are also thriving have similar work environments. Many are engineers who have jobs that allow them to work at their own pace if their work is done. They aren’t expected to be master communicators or to master neurotypical social skills. No one at work complains if they are “socially awkward” as long as they get their job done.

On the flip side, those in the group who are struggling are in work environments and home environments that expect them to network, go to meetings, and conform to unnecessary neurotypical social norms even if it isn’t part of their job requirements. They must go to places on the regular with no supports in place. This is where the work needs to begin for the mental health of autistic adults. Not with teaching them to change, but by creating a world that supports their needs so they can flourish.