Open Society

The neuronormative interventions often stem from a neuro-disorder narrative that justifies targeting core traits by framing them as pathological (Yang, 2019). The consequence of a cultural narrative of tragedy, epidemic, and othering has resulted in the proliferation of interventions that have been justified as remedies, aimed at reducing the health, education, or economic “burden” of autism (Baxter et al., 2015).

Many support schemes for autistic children and young people are designed to support them to fit in and conform with idealized notions of neuronormativity, “with the autistic lifeworld being invaded by a never-ending tide of interventions that try to eradicate autistic styles of diversity” (Milton, 2017). Rather than caring for the young person in a way that accepts and develops their individuality, these kinds of support often tacitly take neurotypical behavior as the standard to aim at and lead the autistic child or young person to mask their autistic traits and repress their atypical sensory and emotional reactions. While in the short term, it can lead to measurable improvements in adaptation to society and higher achievement, in the long term, it can lead to an increased mental strain, alienation from one’s authentic self, depression, and a higher suicide risk. Thus, we see the need for an approach to supporting autistic children and young people that is, by principle, grounded in acceptance of the autistic diversity of being and informed by autistic experience, which we elaborate on in this article.

The lifeworld care model forms the basis of a value-based theoretical framework for considering the spectrum of possibilities in providing potentially humanizing through dehumanizing care and interactions (Todres et al., 2009). The humanizing framework, underpinning the experience-sensitive framework of health care, is compatible with the social model of disability and places individuals at the center of care and considers how support can uphold the key aspects of what it means to be human, as outlined by the eight dimensions of care. Embedded within these dimensions are some essential principles for practice; a collaborative approach, flexibility, accessible communication, and personalization of support based on a deep understanding of the person and their circumstances.

The dimension of insiderness recognizes that we each have a personal world that carries a sense of how things are for us. Only the individual themself can be the authority on how this inward sense is for them. This authority may be tentative and unspoken in children and young people as they develop language and concepts to make sense of their inner world, including those areas not yet explored. Objectification treats someone as lacking in subjectivity, or as a tool or object lacking agency, to be used (LaCroix & Pratto, 2015) and can occur when the young person is reduced to a label, a list of symptoms, a diagnostic category, or is seen as a risk because of their diagnosis, or another “case” or statistic. Objectification denies the inner subjectivity of a child or young person, removing their full humanness or agency, while treating their inner world as thin or non-existent. Objectification from others can result in self-objectification or dehumanization (Calogero et al., 2011).

Being human involves being able to make choices and to be generally held accountable for one’s actions. Having a sense of agency is closely linked to a sense of dignity.

To be human is to actualize a self that is unique. Each person’s uniqueness is a product of their relationships and their context. Recognizing the child and young person’s characteristics, attributes, and roles (e.g., age, gender, ethnicity, class, friend, son, and student) honors and supports them in their journey toward a flourishing life and is essential for well-being. Homogenization erodes identity by focusing on conformity and norming.

A person’s uniqueness exists in relation to others and in community with others. Through relationships, practitioners and the children and young people they work with have the opportunity to learn more about themselves, through both commonalities and differences. Inclusive practices nurture a sense of belonging and connection. Togetherness is experienced through building bridges of understanding and empathy to validate the young person’s suffering, struggles, strengths, and perspectives.

Sense-making involves a motivation to find meaning and significance in things, places, events, and experiences. The child or young person is viewed as the nascent storyteller and storymaker of their own life. Autistic ways of being and perceiving are understood as intrinsically meaningful and help formulate a view of the young person’s lifeworld, their health, well-being, and identity. Listening openly to autistic interpretations of experiences in a relational way supports the young person to make sense of their world so they can define their experiences and reflect on how these experiences have shaped them.

To be human is to be on a journey. Understanding how we are at any moment requires the context of the past, present, and future, and ways of bringing each of these parts together into a coherent or appreciable narrative. A child or young person can and should be able to simultaneously feel secure in connections to the past while moving into the unfamiliarity and uncertainty of the future.

To feel “at home” is not just about coming from a physical place, it is where the young person finds meaning and feels welcome, safe, and connected. Security, comfort, familiarity, and continuity are important factors in creating a sense of place. Dislocation is experienced when the child or young person is in an unfamiliar, unknown culture where the norms and routines are alien to them. The space, policies, or conventions do not reflect their identity or needs.

Being human means living within the limits of our human body. Embodiment relates to how we experience the world, and this includes our perceptions of our context and its possibilities, or limits. A child or young person’s experience of the world is influenced by the body’s experience of being in the world, feeling joy, playfulness, excitement, pain, illness, and loss of function. Embodiment views well-being as a positive quality while also acknowledging struggles and the complexities of living (Todres et al., 2009).

The experience sensitive approach is a coherent, neuroinclusive framework that promotes a dignified, respectful, personalized approach to care, which has potential for universal application across health care (Figure 1).

Too often autistic young people’s unique, expert knowledge is cast aside, and the child or young person becomes exhausted trying to convince clinicians of their perspective, defending against expertise based on preconceived, erroneous medicalized, or neuronormative ideas.

Dark forests like newsletters and podcasts are growing areas of activity. As are other dark forests, like Slack channels, private Instagrams, invite-only message boards, text groups, Snapchat, WeChat, and on and on. This is where Facebook is pivoting with Groups (and trying to redefine what the word “privacy” means in the process).

These are all spaces where depressurized conversation is possible because of their non-indexed, non-optimized, and non-gamified environments.

Is our universe an empty forest or a dark one? If it’s a dark forest, then only Earth is foolish enough to ping the heavens and announce its presence. The rest of the universe already knows the real reason why the forest stays dark. It’s only a matter of time before the Earth learns as well.

Podcasts are another example. There, meaning isn’t just expressed through language, but also through intonation and interaction. Podcasts are where a bad joke can still be followed by a self-aware and self-deprecating save. It’s a more forgiving space for communication than the internet at large.

Dark forests like newsletters and podcasts are growing areas of activity. As are other dark forests, like Slack channels, private Instagrams, invite-only message boards, text groups, Snapchat, WeChat, and on and on. This is where Facebook is pivoting with Groups (and trying to redefine what the word “privacy” means in the process).

These are all spaces where depressurized conversation is possible because of their non-indexed, non-optimized, and non-gamified environments. The cultures of those spaces have more in common with the physical world than the internet.

Those of us building dark forests risk underestimating how powerful the mainstream channels will continue to be.

The dark forests grow because they provide psychological and reputational cover. They allow us to be ourselves because we know who else is there. Compared to the free market communication style of the mass channels — with their high risks, high rewards, and limited moderation — dark forest spaces are more Scandinavian in their values and the social and emotional security they provide. They cap the downsides of looking bad and the upsides of our best jokes by virtue of a contained audience.This is a trade more and more people are looking to make.