Rethinking Norms: A Neurodivergent Parent's Perspective on Early Autism Research

It was early on that my wife and I noticed our daughter exhibited traits that mirrored my own experiences of the world—traits that I later knew pointed to autism. As both educators, we were equipped to provide the specialised care and attention she needed, leading us to decide against seeking an official diagnosis. Instead, we chose to homeschool our neurodivergent children, believing that a tailored educational environment would better support their unique needs and strengths. Our decision was also political; we wanted to empower our children with the choice of whether to adopt the label of “autistic” or “disabled,” allowing them to define their own identities and how they present themselves to the world. In our daughter’s case, despite forgoing a formal diagnosis, there was no question in our minds that she is autistic, much like me, though in her own distinct way (I absolutely delighted in exploring her language development as a gestalt processor and some of the amazing gestalts she would come up with).

This personal journey underscores a critical issue in autism research: the normative perspectives that dominate the field. By using neurotypical development as the baseline for comparison, research often pathologises neurodivergent behaviours, framing them as deviations from the norm. This approach not only perpetuates stigma but also fails to recognise and value the inherent diversity of human cognition and development. In today’s article, I will critique these normative perspectives and advocate for a shift towards a neurodiversity-affirming framework that celebrates differences as natural variations rather than deficits.

Research Study: Caregiver greeting to infants under6 months already reflects emerging differences in those later diagnosed with autism

In reviewing a recent study on early caregiver-infant interactions, I found the paper’s focus on greeting behaviours particularly intriguing. The researchers observed and analysed how caregivers greet their infants during the first six months of life, noting significant differences between interactions with neurotypical infants and those later diagnosed with autism. The study revealed that caregivers of autistic infants used greeting behaviours—such as widening the eyes, raising the eyebrows, and opening the mouth—less frequently and at later stages compared to caregivers of neurotypical infants. The authors suggest that these early social cues can serve as potential indicators for identifying autism earlier than current diagnostic practices allow.

The objective of the study was to explore how early social behaviours differ between neurotypical infants and those later diagnosed with autism, and to understand how these differences might influence early detection and intervention strategies. The researchers conducted a longitudinal analysis, collecting video recordings of caregiver-infant interactions from birth to six months. They meticulously coded these interactions to identify the presence and frequency of greeting behaviours. This methodical approach allowed them to map the developmental trajectories of these behaviours and draw meaningful comparisons between the two groups.

One of the strengths of this study is its longitudinal design, which provides a rich dataset for understanding how these interactions evolve over time. By focusing on the first six months of life, the researchers aimed to capture a critical period in social and cognitive development. The detailed coding of behaviours offers a granular look at how infants’ responses can shape and be shaped by their caregivers' actions.

However, whilst the study’s objective observations provide valuable insights into early developmental differences, they also highlight a critical issue: the reliance on neurotypical norms as the baseline for understanding and interpreting these differences. This approach inherently positions neurotypical development as the standard, against which autistic behaviours are measured and often seen as deviations. This framing can lead to a pathologising perspective, where the unique developmental paths of autistic individuals are viewed through a deficit lens rather than being recognised as different but equally valid ways of engaging with the world.

Pathologising Differences

I can’t say it enough, using neurotypical development as a baseline in research and clinical practice can inadvertently pathologise neurodivergent behaviours. By setting neurotypical standards as the norm, any deviation from these benchmarks is often viewed as a deficit or abnormality. This approach was evident in the study, where the interactions of caregivers with autistic infants were compared to those with neurotypical infants. The study highlighted that caregivers of autistic infants used greeting behaviours—such as widening the eyes, raising the eyebrows, and opening the mouth—less frequently and at later stages. Whilst these findings provide insights into early social differences, they also underscore the problematic nature of using neurotypical norms as a universal standard.

This normative perspective can lead to significant stigma and misunderstanding. When neurodivergent behaviours are viewed through a deficit lens, it reinforces the notion that these behaviours are inherently problematic and need to be “fixed.” This can marginalise neurodivergent individuals and their families, perpetuating negative stereotypes and societal exclusion. For example, if an autistic child’s unique way of communicating or interacting is constantly measured against neurotypical standards, it not only undermines their self-esteem but also affects how they are perceived and treated by others.

In our family, we experienced this firsthand through our daughter’s development as a gestalt language processor. She developed language in a unique way, creating interesting and creative scripts. My wife and I understood her perfectly and could interact with her on her level, but others often found it strange. One humorous instance involved the Mexican Spanish slang term for going to sleep, “mimis,” which our daughter used to mean rain. When her Spanish-speaking grandfather, my adoptive father, would tell her it was “mimis time” for a nap, she thought he was weird—after all, it wasn’t raining. Eventually, we clued him in on her language development and helped him speak her language. This small adjustment not only improved their interactions but also demonstrated the importance of understanding and respecting neurodivergent communication styles.

By viewing autistic development as typical for autistic individuals, we can begin to shift the narrative from one of pathology to one of diversity. Embracing neurodiversity means recognising that differences in development, cognition, and behaviour are natural variations of human diversity, not deficits or abnormalities. This perspective fosters a more inclusive and supportive environment, where neurodivergent individuals are valued for their unique contributions and experiences.

Importance of Neurodiversity

Neurodiversity is the concept that neurological differences, such as autism, ADHD, and dyslexia, are natural variations of the human genome. These differences should be recognised and respected as part of the spectrum of human diversity. Embracing neurodiversity is crucial for understanding and valuing the full range of human experiences and capabilities. Rather than viewing neurodivergent traits as deficits that need to be corrected, a neurodiversity-affirming perspective focuses on the strengths and unique abilities that each individual brings.

A strength-based approach shifts the focus from what neurodivergent individuals lack to what they excel at. For example, many autistic individuals have exceptional attention to detail, strong pattern recognition, and deep, specialised interests that can lead to significant contributions in various fields. By recognising and nurturing these strengths, we can create environments that support and empower neurodivergent individuals.

Reframing the study’s findings within a neurodiversity-affirming perspective involves challenging the underlying assumptions about typical social behaviours. The study focused on “greeting behaviours” such as facial expressions and gazes, noting that caregivers of autistic infants used these behaviours less frequently. However, the autistic community often reports discomfort with eye contact and certain facial expressions. This discomfort is not a deficit but a different way of experiencing and engaging with the world. Therefore, the lower frequency of greeting behaviours might reflect a natural, comfortable interaction style for autistic individuals and their caregivers, rather than a deviation from a normative standard.

In this context, the findings could be interpreted as illustrating how autistic individuals and their families develop their unique interaction styles that align with their preferences and comfort levels. For instance, an autistic parent might avoid initiating greeting behaviours that involve direct eye contact or exaggerated facial expressions because they understand their child’s discomfort with such interactions. This understanding fosters a more authentic and respectful way of communicating, which should be valued and respected.

By reframing the narrative to focus on neurodiversity, we can better appreciate the varied ways people interact and communicate. This approach not only validates the experiences of neurodivergent individuals but also encourages the development of inclusive practices that respect and accommodate different ways of being. Recognising neurodiversity helps dismantle the stigma associated with neurological differences and promotes a society that values all forms of human diversity.

Diagnosing the Parent

One of the profound experiences in the journey of understanding autism within my family has been the shared discovery of neurodivergent traits. Often, it is the child’s diagnosis that acts as a catalyst for a parent’s self-discovery. In my case, recognising the signs of autism and gestalt processing in my daughter prompted me to reflect on my own experiences and traits as a non-verbal autistic. This dual discovery process is not uncommon in neurodivergent families, where the recognition of traits in one family member brings to light similar patterns in others.

This shared diagnosis has had a significant impact on my approach to parenting and self-acceptance. Unlike the “autism mom” narrative, which often frames the child’s diagnosis as a burden on the parent and fuels a quest to “cure” the child, our experience has been about mutual understanding and acceptance. Instead of seeing my daughter’s autism as something that needs to be fixed, I view it as a natural and beautiful part of who she is—a perspective that also applies to myself. This has allowed us to foster an environment of empathy, support, and celebration of our unique ways of being.

Understanding our shared neurodivergent traits has deepened the bond between us. It has enabled me to be more attuned to my daughter’s needs and preferences, and to advocate for her in a way that respects her autonomy and individuality. This experience has also led to greater self-acceptance and pride in my identity as an autistic person. By embracing our neurodivergent traits, we reject the notion of being victims of autism and instead embrace a narrative of strength, resilience, and mutual support.

In this way, the shared journey has transformed our lives positively, reinforcing the importance of recognising and valuing neurodiversity within families. It has shifted our focus from seeking to conform to neurotypical standards to embracing our authentic selves and supporting each other in thriving as neurodivergent individuals.

Broader Implications and Recommendations

The findings from the study offer important insights but also highlight the need for future research to incorporate neurodiversity perspectives more comprehensively. To achieve this, inclusive methodologies must be adopted that truly value neurodivergent experiences. One such approach is the Power Threat Meaning Framework (PTMF), which shifts the focus from diagnosing deficits to understanding the underlying reasons for behaviours and their personal and social meanings. This framework can help researchers develop questions that are more aligned with the lived experiences of neurodivergent individuals. Additionally, involving autistic people in the crafting of research questions ensures that studies address issues that are meaningful and relevant to the community. Increasing the presence of autistic individuals on Institutional Review Boards (IRBs) and in teaching and research positions can further enhance the inclusivity and relevance of autism research.

Recognising neurodiversity can profoundly influence educational practices. For instance, educational strategies should move away from forcing neurodivergent students to conform to neurotypical standards and instead focus on creating supportive learning environments that celebrate and utilise our unique strengths. Educators can employ flexible teaching methods, such as project-based learning and individualised instruction, to cater to diverse learning styles.

Policymakers also play a crucial role in fostering an inclusive society. Policies should promote the inclusion of neurodivergent individuals in all aspects of life, from education to employment. This includes providing adequate support and accommodations in schools, workplaces, and public services. Policymakers can also fund and encourage research that is participatory and co-designed with neurodivergent communities, ensuring that our voice are central to the decision-making process.

Final thoughts …

In this article, we’ve explored the significant implications of normative perspectives in autism research, particularly how using neurotypical development as a baseline can pathologise neurodivergent behaviours. We discussed the importance of recognising and valuing neurodiversity, emphasising that differences in development are natural variations rather than deficits. By reframing the study’s findings to support a neurodiversity-affirming perspective, we can better appreciate the unique interaction styles of autistic individuals and their families. Additionally, we delved into the shared journey of diagnosis between parent and child, highlighting how this experience can foster mutual understanding and acceptance, rather than perpetuating a victim narrative. Finally, we outlined the broader implications for research, policy, and practice, advocating for inclusive methodologies and support systems that respect and celebrate neurodivergent ways of being.

Reflecting on my own journey of understanding and embracing neurodiversity, I see the profound impact it has had on my family. By viewing our differences as strengths, we have created an environment of empathy, support, and pride in our identities. This journey has taught us to value authenticity over conformity and to advocate for a world that respects all forms of human diversity.

As a closing thought, I invite neurotypical readers to consider: would you be comfortable in a world designed by and for the neurodivergent? If your answer is no, take a moment to explore why. What fears or reservations do you have? How might these fears inform your view of neurodivergent individuals and your treatment of them? Understanding these questions can be a powerful step toward fostering greater empathy and inclusion.