As a disability studies scholar and educator Heather concentrates on autism spectrum disorder and other learning and developmental disabilities. Her empowering book “Girls with Autism Becoming Women” takes the audience along the journey of seven women with autism including Temple Grandin and Liane Holliday-Willey as they make the transition from a child to an adult woman and how each deals with the journey.

What inspired you to come up with your book “Girls with Autism Becoming Women”?H: 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.
I was diagnosed with Stargardt’s Macular Dystrophy in 1993, when I was 15 years old. 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 children who have ASD. 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 believe that having a sensory impairment (low vision) gives me a deeper insight into some of the sensory differences that affect people with ASD.
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, I was overwhelmed by the amount of data. I reconsidered how to limit my data set and became more intrigued by the fact that there were fewer autobiographies by women (7) versus men (11) with autism. 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 versus girls who make up the other 25%. My data set also reflected this difference, though not quite as dramatically. Approximately 61% of the autobiographies in my research were written by men, while only about 39% were women. If contemporary measures are accurate, autism is diagnosed among 1% of the population, making women with autism .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 with autism.
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, it had been published by JKP. So I was more than thrilled when JKP released my book in 2018.

Who can benefit from reading this book and why?H: Diverse audiences can benefit from reading my book. Anyone who has an ASD, especially 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 family members with autism. Clinicians, teachers, therapists, health care workers, and caregivers may gain a more nuanced understanding of the personal and political issues facing girls and women with autism. 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? How has your work assisted you with your book?H: Over the last 26 years, I have formed connections with people who have autism 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, and, most recently, as an ABA therapist.
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 have gotten to know many families over the years and noticed that individuals with autism 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, 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 children with autism 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 characterize as “autistic”. As research advances, I predict we will untangle several genetic syndromes that account for various typologies of autism.
The disparity between the number of boys and girls diagnosed with autism is still not completely understood. Like I previously stated, boys are four times more likely to be diagnosed with autism. 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 clinical opinion, girls with autism seem more socially motivated than boys with autism. Of course there are exceptions, I have seen a number of boys with autism who were interested in their peers and tried to engage with them, but girls with autism seem to be more socially motivated and skilled. 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 women with ASD 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?H: 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. People with autism should tell us how they want to be treated and represented. There are many autism self-advocacy groups that articulate their goals better than I can. By the same token, people with autism 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 people with autism 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?H:  My first priority when writing this book was to empower girls and women with autism, 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.
To the current generation of girls with autism coming of age, you come from a long line of people with autism 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 women with autism could not benefit from civil rights legislation like IDEA and ADA.
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 theatres. Depending on where you live, there may be public services for people with disabili9es. 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 it is not Intrinsically negative. Autism can be creative, beautiful, unique, inspirational, and positive.
To parents and relatives, the two most compelling factors that appear to influence the lives of women with autism 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 girls and women with autism 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 disability enhances life in ways that were unexpected, but positive. 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.