Autistic girls and women often go un-or-underdiagnosed. Heather Stone Wodis’ book Girls with Autism Becoming Women investigates the experiences of seven autistic women as they transition from childhood to adulthood and how they make sense of that journey.
What inspired you to come up with your book “Girls with Autism Becoming Women”?
This book is a revised version of my dissertation for the Ph.D. program in Disability Studies at the University of Illinois in Chicago. My work represents a culmination of over 25 years of experience working with people who have ASD, but it is also inspired by personal experience as a woman with a disability.
At 15, I received the diagnosis of Stargardt’s Macular Dystrophy in 1993. This particular type of Macular Degeneration is a rare, genetic eye disease that deteriorates central vision, but leaves peripheral vision intact. A year and half after learning about my own disability status, I got my first job working with autistic children. Since that time, my experience of disability has run parallel to an affinity for work with people who have disabilities, specifically autism. Regardless of impairment, there are serious social ramifications to having a disability. For example, many people with low vision or an ASD find it difficult to make eye contact. The difficulty or inability to make eye contact in a normative way has real social consequences; others may find your behavior to be dishonest, rude, or deceptive.
I became interested in disability narratives during my doctoral studies.
In 2002, there were significantly fewer first-hand accounts of autism than there are today. The lack of personal narratives about autism at that time made it even more vital to highlight and explore the sources that were available. I was committed to conducting disability studies research that reflected the same ethos of self-representation outlined in Nothing About Us without Us, the seminal work by disability studies pioneer and advocate, Jim Carlton. After compiling 18 autobiographies of American men and women with ASD, the amount of data overwhelmed me. I reconsidered how to limit my data set and became more intrigued by the fact that there were fewer autobiographies by autistic women (7) versus autistic men (11). Men not only wrote more autobiographies; they were four times more likely to be diagnosed with autism.
Current statistics estimate that 75% of the population diagnosed with autism are boys and men versus autistic girls and women who make up the other 25%. My data set also reflected this difference, though not quite as dramatically. Men wrote approximately 61% of the autobiographies in my research, while women wrote only about 39%. If contemporary measures are accurate, autism is diagnosed among 1% of the population, making autistic women .25% of the population, a significant minority. I felt that it was important for my research to bring more attention to the experiences of these minority women.
After finishing the lengthy dissertation process, I proposed a revised copy to Jessica Kingsley Publishers in London. Publishing a book with JKP had long been a dream of mine. It seemed like every time I read a great book about autism, JKP published it. So I was more than thrilled when JKP released my book in 2018.
Who can benefit from reading this book and why?
Diverse audiences can benefit from reading my book. Anyone who has an ASD, especially autistic girls and women, may find inspiration or affirmation within the pages of my book. Parents and family members may discover or confirm the essential role they play in the development and lives of autistic family members. Clinicians, teachers, therapists, health care workers, and caregivers may gain a more nuanced understanding of the personal and political issues facing autistic girls and women. Scholars, researchers, and other professionals may learn from my findings and qualitative methodology. In addition, someone with little or no knowledge of autism will find a progressive introduction that is also compelling and easy to read.
Can you tell us about your work and how it assisted your book on autistic girls and women?
Over the last 30 years, I have formed connections with autistic people in a variety of ways. I have been a friend, mentor, teacher, student, camp counselor, paraprofessional, LEND trainee, respite worker, summer camp supervisor, Sunday school teacher.
My research has always been grounded in real world experience. I like to say that my knowledge is not limited to the Ivory Tower: I have been in the trenches for years. When I think about autism from an academic or scientific perspective, I can apply it to a treasure trove of real world experiences that tests the strength of any given theory. At the same time, my clinical practice often guides my research pursuits. One area where practice and theory overlap is the genetic transmission of ASD. I know many families and noticed that autistic individuals often had siblings, cousins, parents, or other relatives who also fit within the autism spectrum.
Research has long suggested a strong genetic component. If one identical twin is diagnosed with autism, for instance, the other has about a 75% chance of also having it. The risk is less for fraternal twins, but still significant at a 34%. Some studies suggest that siblings of autistic children are 14 times more likely to also have autism. The results emerging from the SPARK study corroborate the genetic origins of autism. The SPARK study also confirms another opinion that I have long held. That is, what we have labeled as autism is actually a group of neurological conditions that result in behavior we have characterized as “autistic.”
As research advances, I predict we will untangle several genetic syndromes that account for various typologies of autism.
We still don’t understand the disparity between the number of boys and girls diagnosed with autism. Like I previously stated, boys are four times more likely to be diagnosed. Genetics account for part of this disparity, but so do flawed diagnostic tools and imperfect methods. The issue is incredibly complex, especially because it is so difficult to tease out the degree to which biology or social conventions are at play. It appears that autism manifests slightly differently in girls. Girls may have different fixations, obsessions, and behaviors. In my opinion, autistic girls can seem more socially motivated than boys. Research shows that girls within the general population acquire language and social understanding sooner and more effectively than boys their age (Adani & Cepanec, 2019). This seems true in the population of children with ASD.
Of course there are exceptions. This isn’t absolute, there are exceptions, but females in our species seem more socially adept than males. The same appears to be true for girls with ASD. However, our contemporary diagnostic tools do not account for girls’ increased social aptitude. I believe there are many undiagnosed or misdiagnosed autistic girls and women living today. Advances in genetic research and improvements in diagnostics are critical to accurately recognize and count people who have ASD.
What can be some effective ways to promote autism awareness?
At this point in history, there is more awareness of autism than ever before. Now is the time to move from awareness to acceptance, from tolerance to inclusion. We must listen to autistic people when they tell us their boundaries and wants. There are many autism self-advocacy groups that articulate their goals better than I can. By the same token, autistic people do not want charitable organizations misrepresenting them. For example, the use of a puzzle piece image to symbolize people with ASD is offensive to many, implying that autistic people are mysterious and enigmatic. The concept of neurodiversity seems to be a more responsible way of promoting autism acceptance and inclusion.
Neurodiversity refers to the natural, biological variation that exists in any species, but more specifically, neurological diversity within the human species. According to the neurodiversity paradigm, the majority of people fit somewhere in the average or neurotypical NT range. However there are many variables that might lead to Neurodivergence or distance from the neurotypical norm. There are an infinite number of variables that lead to Neurodivergence: a neurological or psychiatric condition like autism, ADHD, OCD, anxiety, depression or sensory impairment. Neurodivergence does not make one autistic, but autism is a form of Neurodivergence. I like to joke, it’s like the idea that a square is a rectangle but a rectangle is not a square.
In any case, the concept of neurodiversity insists that Neurodivergence is natural and normal, not pathological or deviant. My beliefs in the principles of neurodiversity guides my clinical practice, research methodologies, scholarly perspective, advocacy efforts and personal beliefs.
What is your suggestion for families of children with disabilities to empower their children?
My first priority when writing this book was to empower autistic girls and women. I chose autobiographies because I wanted to amplify their voices. The women in my book felt empowered when they were allowed to follow their own creative interests and pursuits.
For autistic girls and women: know your rights. The Individuals with Disabilities Education Act (IDEA) ensures your right to a free and public education. The Americans with Disabilities ACT ADA gives you the legal right to access public spaces like libraries, parks, restaurants, and theaters. Depending on where you live, there may be public services for people with disabilities. You have the right to benefit from vocational rehabilitation and discounted public transit. Take advantage of technology. Tablets are an easy and mobile type of augmented communication technology. The Internet is a useful tool to help look for friends, form online connections, and networks of support. Online communication may be a more comfortable way of making and maintaining connections.
Advocacy groups like GRASP and ASAN can empower you politically and personally. Tap into the disability rights and advocacy movement for inspiration, support, and common ground. Follow your passions and let them guide you. Embrace neurodiversity. You may have a neurological difference, but autism can be creative, beautiful, unique, inspirational, and positive.
Any further words of wisdom?
To the current generation of autistic girls and women coming of age: you come from a long line of autistic people who came before you. Leo Kanner may have named this way of being in the world autism in 1943, but it existed by many archaic and obsolete names before that time. You are not alone. Temple Grandin, Erika Hammerschmidt, Deborah Thorsos, Therese Ronan, and Sherry Cowhey are some of the women who came before you. Previous generations of autistic girls and women could not benefit from civil rights legislation like IDEA and ADA.
To parents and relatives: the two most compelling factors that appear to influence the lives of autistic women are the support of families, especially parents, and age of diagnosis. Girls who receive an early diagnosis and have supportive families appear to have better outcomes in adulthood. You already know that autistic girls and women are valued members of your family. They bring with them challenges, but also new possibilities. Many parents and families find that having someone with a different ability enhances life in unexpected but positive ways. Connect with other families in similar situations, share your frustrations and achievements. If you suspect that your child is showing early signs of autism, talk to your pediatrician. The CDC is a great resource that provides developmental milestone checklists and other helpful information. Choose evidence based interventions based on research and scientific
methods.
Raise a creative confident child. Check out personal stories of creators living with disabilities.
Where can your book for autistic girls and women be found and what is the best way to get in touch with you?
Girls with Autism Becoming Women can be found via most retail outlets including JKP.com, Amazon, Barnes and Noble, and Target. You can find me on Facebook or LinkedIn.
Adani, S., & Cepanec, M. (2019). Sex differences in early communication
development: behavioral and neurobiological indicators of more vulnerable
communication system development in boys. Croatian medical journal, 60(2),
141–149. https://doi.org/10.3325/cmj.2019.60.141