Over 75 million people in the world are Autistic, yet information about the experiences of and support for Autistic adults is limited.
We have a picture in our minds of what autism “looks” like, but that is only a stereotypical external presentation. Autism Spectrum Conditions are largely misunderstood because much of the autism experience is internal and invisible. Autistic individuals have a different way of seeing, interacting with, and processing the world. They often have multiple sensitivities—physical, emotional, and sensory—and can find the world to be an overwhelming place.
In people who do not identify as a young white male, diagnosis is difficult.* Due to the high rates of masking (hiding or suppressing Autistic traits) in women and other minority communities, there is a great deal of misdiagnosis or no diagnosis at all, leading to further mental health challenges.
*Note on self-diagnosis: An Autism Spectrum Condition diagnosis is a privilege for many individuals, women in particular, as there are many barriers to obtaining a clinical diagnosis. Some of these barriers include stigma, assessment tools that were developed for wealthy, white, gender-conforming boys in mind, a lack of specialists who are qualified to assess and diagnose autism in adults, an inability to afford the assessment, and a difference in the presentation of autistic traits in women (Price, 2022; Talcer et al., 2021).
Parenting & Autism
Becoming a parent put my nervous system into constant hyper-arousal. I can see now that my strategies for self-regulation (which I wasn’t aware of at the time) became unavailable once I had a living child. After reading Moyna Talcer’s article A Qualitative Exploration into the Sensory Experiences of Autistic Mothers, I became very focused on exploring why parenting presents extra challenges to Autistic parents. In my role as a professor, I worked with a team of students to further understand this topic.
Autism, Pregnancy Loss, and Grief
For those who know me, I appear stoic and don’t usually express emotions outwardly (which I can now attribute to alexithymia). My internal experience, however, is completely different, as I am highly empathetic and feel deeply. I became curious to understand how my response to my stillbirth could be viewed through an autism lens.
From the time that I found out Norbert’s heart had stopped beating and through the birthing process, I became suddenly overwhelmed and unable to process anything. This sensory processing failure led to shutdown. I was in shock, numb, and dissociated. I did not cry. I also judged myself because I did not grieve in the “expected” way.
It’s important for us to understand that the appearance and needs of Autistic people differ from the typical grieving person.
In a split second, I experienced the loss of my assumptive world. I needed facts, information, a plan, guidance (from providers), which I did not receive. With this tremendous uncertainty, my fear and anxiety skyrocketed. With Return to Zero: HOPE, I created what was missing in my own life experiences surrounding the stillbirth of my son in order to help other people navigating this experience.
Neurodiversity Resources
General
Neurodivergent Insights: Dr. Megan Anna Neff is a neurodivergent (Autistic-ADHD) clinician, parent, and advocate.
Embrace Autism (find Autism screeners here and a great overall resource)
Is This Autism by Donna Henderson , Sarah Wayland, Jamell White
Unmasking Autism: The New Faces of Neurodiversity by Devon Price
Autistic Burnout
Podcasts
Divergent Conversations Episode 22 (Dr. Kiley talking about autism, grief, and pregnancy loss)
Autism in Women
Women and Autism (Neurodivergent Insights)
We Need Better Diagnostic Tests for Autism in Women, Scientific American with Zhara Astra (article)
The Vital Importance of Diagnosis of Autism in Women and Girls (Uniquely Human Podcast with guest Zhara Astra)
Autism in Heels by Jennifer Cook O'Toole (book)
Aspergirls by Rudy Simone (book)
ADHD, Autism, and Hormones
ADDitude Magazine
Mom and Mind Podcast: ADHD and Perinatal Mental Health (episode 300)
Prevalence of Premenstrual Syndrome in Autism: A Prospective Observer-rated Study
Autism and Parenting
Understanding the Unique Challenges of Autistic Mothers: Insights from recent research on autism and motherhood (Hanish, 2024, Psychology Today)
Sensory Experiences of Autistic Mothers (Your Anxious Child Podcast, 2024, with Dr. Kiley as guest)
Parenting as a New Autistic Mother: The Impact on Daily Living (Hanish, 2024, Neurodivergent Insights)
Autism and ADHD Diagnoses in Motherhood (Mom and Mind Podcast, 2024, with Dr. Kiley as guest)
Exploring the Sensory Experiences of Autistic Mothers as Occupational Beings (Moxie OT Podcast with Dr. Kiley as guest)
A Comparative Study of Autistic and Non-Autistic Women’s Experience of Motherhood (Pohl et. al., 2020)
A Qualitative Exploration into the Sensory Experiences of Autistic Mothers (Talcer, 2021)
Highly sensitive parent (podcast interview with guest Elaine Aron)
Sensory Experiences of Autistic Mothers (Two Sides of the Spectrum Podcast with guest Dr. Talcer)
Co-Occurring Health Conditions
All Brains Belong Autistic & ADHD adults often have multiple intertwined health conditions, which ABB refers to as “all the things”; they believe treating these conditions as a group (or cluster / constellation) in order to see in more improvements in health and wellbeing.
Exploring the Relationships Among Neurodivergence, Chronic Pain (Fibromyalgia), and Lifestyle Medicine (Uniquely Human Podcast with guest Dr. Michael Lenz, episode 97)
Autism and Health Conditions, Neurodivergent Insights