What Every Autistic Girl Wishes Her Parents Knew

Sharon DaVanport, an autistic and disabled activist and the founding executive director of the Autism Women’s Network, says the group’s book, What Every Autistic Girl Wishes Her Parents Knew, was born when AWN went online. “Parents most commonly inquire about how autistic women approached various topics when they were their daughter’s age,” says DaVanport, one of the book’s three co-editors. “This led to the idea of putting together a publication where parents could readily access a wide variety of views and suggestions from autistic adults.”

DaVanport sees parents struggling with fear generated by their child’s diagnosis, based on information from non-autistic people, who often catastrophize disability. “It’s only when parents reach out to the autistic community,” she says, “that they begin to build an accurate understanding of autism by learning from the lived experiences of actually autistic people.”

Here are some excerpts from the book. While its message of understanding and acceptance is aimed at parents of autistic girls, much of the guidance can be applied to boys on the spectrum, as well:

“I want you to know that there’s a place in the world for your daughter. I want you to know that whether or not she grows up to have a ‘normal’ life isn’t the most important thing. I want you to know that there is no shortage of wonder and rewarding experiences in the world, even if her life doesn’t resemble the one you might’ve anticipated for her. … Even if she never speaks. Even if she never looks you in the eye. Even if she doesn’t go to prom. Even if she never goes to college. Even if she’s never able to drive. Even if she never has a romantic partner or gets married. Even if she never has children of her own.” – Emily Page Ballou

Related: Why Many Autistic Girls Are Overlooked

“People often remark on my social skills and wonder how I can be on the spectrum. I just laugh and remember the countless hours spent glued to my television mimicking the characters on the screen. My skills of echolalia and mimicry helped me ‘pass’ for years until the fateful day when all my coping skills went away. … The thing I most often wish was ‘normal’ has always been my social skills. The social quirks I have of speaking what’s on my mind and being completely oblivious are not always so charming to me. They can lead to depression, as I sometimes feel isolated in a room full of people who all seem to be speaking in a foreign code. … The greatest thing a parent of a girl on the spectrum can do is to support her. Let her know how amazing she is and how much you believe in her. … Most parents do love their children, but it is important to let them know verbally, because we don’t always pick up on nonverbal cues.” – Brigid Rankowski

“Girls on the spectrum are even more likely to be pushed socially than their brothers, if they are even identified. In addition, the huge amount of energy it takes to behave in the ‘social butterfly’ mode is often ignored or overlooked. … It is no accident that autistic girls are more often labeled with depression or eating disorders than with their real neurodivergent natures. When you live from early childhood out of sync with social norms and expectations, it’s easy to feel as if you are alien, wrong, and bad. In such a situation, one would have to be catatonic not to be at least a little depressed. … There are a number of things I wish my parents had known and had been able to teach me. These include how to make friends, how to tell if people really are friends, how to deal with bullies and bullying (as I have learned that often institutions don’t do this effectively), and that it is okay not to live in herds.” – Jane Strauss

“I wish my parents knew that when I was ‘refusing’ to do something, it was often because I was overwhelmed and wasn’t given the right kind of support, especially with chores. It was difficult to be around a bunch of people, and in asking if we could go to a different (quieter) restaurant, or turn off certain noises, or not give Grandma a kiss and a hug all the time, I wasn’t trying to be rude. These were sensory issues. My parents often told me I needed to learn to ‘get over it,’ and if I didn’t I’d never be able to function in life, college, on the job, with a boyfriend, etc. I wish I could have grown up in an environment where I wasn’t constantly treated like I was broken. I felt like I wasn’t OK unless I learned to act like everyone else.” – Kate Levin

“No one expects one person to change [society’s views of disability]. What you can do is change your world. You can give your child the tools to be a strong self-advocate. You can give your child an example of a true ally by changing the conversation about autism and disability in your own lives and homes. How do you do that? Presume competence. Presume that your child is aware and wants to understand. … Respect your child. Do not do to your autistic child what you would not do to a typically developing child. Your autistic child is not in need of fixing. They are in need of acceptance and understanding. … Redefine normal. Recognize that normal is subjective. Stimming, flapping, perseverance, and accommodating sensory preferences are not reasons to apologize. … Calm down. Your autistic child at three is not your autistic child at nine. Or 15, or 30. Do not write the story of your child’s life before they even enter kindergarten. … Seek out the autistic community. … If you want to learn about autism and what it is like to live an autistic life, no one else will be able to help you understand like we can. … Lastly, understand what acceptance really means. It does not mean no supports or accommodations. It does not mean no help or therapies. Acceptance means that you accept your child’s autistic neurology as valid.” — Lei Wiley-Mydske

“When I was in middle school, the bullying I had been subject to for the last six or seven years suddenly took on a sexual tone. The girls bullied me by spreading rumors that I was having sex. … The boys bullied me too, but in a different way. I got pulled into niches beneath the stairs or little alcoves behind the lockers where I would be groped or kissed against my will. … If you want your daughter to feel like the door is open for her to come to you to talk about sexual issues (and I do hope that is what you want!), your openness needs to start many years earlier. How you respond to non-sexual problems in your daughter’s life will set the tone for what she will expect if she comes to you with a sexual problem.” — Sparrow R. Jones

“My wish for young autistic women is that their parents listen to them and facilitate friendships with whomever they want to hang out with. But I think it is so important that these girls are given opportunities to build relationships with other autistic girls. There is so much that autistic women and girls can give to each other. … Navigating the complicated social rules of girls and women is so very difficult. Doing it with a friend or two who truly understands and likes you for who you are make it — if not easier — at least less painful. … Autistic peers and older role models can do so much to help young girls with their self-esteem, self-awareness, and feelings of safety.”— Jean Winegardner