10 A Particular way of Being

Karen Lean

Allow your daughter to veer off whatever map you think she’s been placed on

TEACH YOUR GIRL to be fierce instead of delicate. Trash gender expectations and nurture the child in front of you. Refuse to be typical parents, because your child is not typical. Refuse the status quo, because it does not serve girls and it especially does not serve autistic girls.

Girls should get dirty. We should ask questions and explore. We need our anger, our curiosity, our boundaries, our softness, our toughness, our brilliance. We need to learn that we’re not wrong merely because we don’t match our peers or our gender or those autism textbooks. We can be powerful if you help us remove the obstacles in our way. We deserve confidence in our powers as birthrights.

Autistic girls mess up norms. We bust misconceptions about gender and autism. These are assets in spite of a world that thinks otherwise. Don’t expect girls to labor under the burdens of wrong expectations. Instead, nurture possibility and difference.

I object to the term “disorder” for describing autism. I object to that description overall because autism has a coherence. It’s certainly a different way of experiencing the world, but the problem and the dis-order happens because non-autistic people aren’t listening to actual autistics.

By different I don’t mean special, and I rather despise the term “special needs.” By different, I mean that many people I talk to do not identify with my experience even if they can understand it. Many people do not, and have no interest in, understanding. I hope that as a parent of a girl labeled as some kind of autistic, you have an interest in understanding.

Listen to your girl. Even if she doesn’t talk, she’s telling you something.

Sensory Experiences

I don’t usually cheer about psychiatry, but I cheered when the American Psychological Association included sensory differences in the DSM-5 criteria for autism spectrum disorder. It’s a step in the right direction because I think that the sensory and neurological landscape of autistics is central to understanding autism.

I feel intensely. I smell mold and bad food before others. I hear fluorescent lights. Clothing hurts, noises invade, colors take my breath away. My daily reality is governed by too much sensation and not enough sensation. Patterns are soothing because they create order in what feels like chaos. Sometimes I shut down and I lose language. Other times I get overloaded and act it out in ways that get me in trouble. My world is intense, rich, real, sometimes painful, and definitely different.

Understand the sensory experience of your child by being curious. Establish her as the authority in this experience. Do not question it but instead ask questions: “Wow, the clouds have lots of colors in them? Can you tell me more about them? Can you name them?” If she’s using her body in ways you don’t understand, let her explain. If she can’t tell you, try to think about what she may be gaining from doing this. I usually do things like wiggle my hands or tap on my head in private because I learned it wasn’t okay to do it in public. I now see that these kinds of repetitive behaviors are methods of calming. Research supports this view, and I think we need to facilitate self-regulation. Even the most socially unacceptable behavior likely has a purpose. She deserves your help being creative so that she can meet her needs.

Understand your girl’s sensory world and honor her experience as fiercely as you honor gravity. If you deny your child’s desires and pain around her sensory world, she may learn that her body and boundaries are not worth respecting.

As a child I learned that my body and my boundaries were wrong. I learned that my discomfort couldn’t possibly be real because my discomfort was uncommon. For example, if my parents put me in a shirt that had a rough tag, I learned that if I cried no one would understand that the clothing hurt me. I felt dismissed when I talked about it, and I was a compliant child, so I didn’t take off the offending item. I learned to put up with extreme bodily discomfort. Relent to pain often enough and it doesn’t become less painful; it becomes a lesson that the pain doesn’t matter. I started to distrust my own body. Almost forty years later, I tolerate discomfort that I should put a stop to.

The pain doesn’t disappear into the background. It interferes with being curious and present in the world. Sensory pain is distracting—I pay less attention to social cues when my senses are overburdened. This kind of overburdening affects my social perception and communication. For instance, when I wear a comfortable outfit to work, I focus better, I think more clearly, and I am more effective with people.

Rather than take issue with wearing the same clothing every day, find out what works about that clothing and buy more of it. Let your girl wear clothes that are comfortable even if they’re boy-gendered; you can find crafty ways to feminize them if that’s what she wants. If you emphasize her appearance as more important than her well-being, she will likely learn that what other people think about how she looks is more important that who she is or how she feels.

Take the distractions and discomforts of her body seriously and help your girl address the worst offenders through creativity. One of the most powerful tools you can give her is control over her environment, her attention, and her physical comfort.

Sensory experiences can range from very painful to highly pleasurable. Understand this and teach your child how to communicate about her pain and pleasure so that she learns how to self-regulate it. Teach her how to understand boundaries around pleasure and pain.

Parents, I hate to tell you this: I strongly connect disrespecting my sensory boundaries with a vulnerability to unwanted sexual contact.

Kids must learn to read cues about whether their actions are wanted or not and respect that communication. When they don’t, they are doing something wrong and the consequences can lead to a pattern of harming people. Kids also need to learn to communicate about unwanted actions that involve their bodies, minds, and hearts. When we don’t, the consequences can lead to a pattern of allowing ourselves to be harmed.

Autistic girls may have the additional challenges of compromised sensory boundaries and freeze and overwhelm reactions. Sometimes I completely shut down and could not stop what was happening with words or actions. I did have sex education, and I learned what was appropriate and inappropriate, but I didn’t understand what felt unsafe until I was so unsafe that I froze.

We need to understand what we don’t want and then communicate clearly, unapologetically, and with enough force to stop it. We need the skills to fight for our integrity. However, even with these skills, we are still vulnerable if our sensory world isn’t made safe, because we won’t understand what safety feels like. Sexual safety means nothing if we ignore our most basic needs for sensory safety.

Encourage your girl to push her boundaries in positive ways, but teach her to never let anyone encroach on her personal space or tell her that she’s weak for experiencing the world the way she does.

Honor her “NO” every single time.

Learning from Mistakes

I choose not to focus on my strengths or my weaknesses. Do you try to focus on her strengths and not her weaknesses in the interest of her self-esteem? Perhaps you experience her weakness as what challenges you, and her strength as what pleases you. I can understand this, but I urge you to turn these on their head for a moment. Maybe they are difficult because you don’t understand her needs around them. What if her needs are perfectly reasonable and when they’re met on their own terms, she can grow as she will?

What if you encouraged her to fail? I became a perfectionist because I felt I got the most love and attention for what I did well. I didn’t feel like I could fail and still be loved. I was terrified of disappointing my parents and teachers. I was allowed to give up if things were too difficult. Worse, I rarely attempted something that was hard. I don’t believe anyone did harm to me on purpose, but I developed an intense aversion to challenge.

Work to understand what your girl struggles with and encourage those struggles. Whether they are social, academic, or physical mistakes, encourage exploration.

I hid my struggles by focusing exclusively on what I did well and did myself a disservice in the process: People assume I do not have challenges in some areas because I am competent in others. Just because I can write a successful grant proposal doesn’t mean I can navigate a crowded club to stay safe. Just because I can explain how matrilineal descent works doesn’t mean I can figure out what to order from a restaurant menu. Just because I can be really articulate and give a television interview doesn’t mean I am able to speak up when I’m emotionally distressed or threatened.

I learned that people won’t believe me when I say I need help, and so I stopped asking. I found passive or covert ways of getting help, which ultimately led to poor self-advocacy. I learned helplessness. Seeking assistance in these ways is highly ineffective and even harmful in adulthood. It has led to relationship dynamics I’m not proud of.

I realized I was different from my peers in grade three. I remember being teased and that this is the first year I can recall being depressed. Grade three is when Sally told me to stop liking Jane because Jane was being mean to Sally, and I thought, “Why would I stop liking Jane when she did nothing to me?” I now understand that all of these types of friendship dynamics were practice for an increasingly complex social world that I didn’t grasp then.

Autistic girls may be able to mimic certain aspects of play and social skills, but the learning curve in the girl world is steep. The school held me back from the gifted stream, and I attribute these social and emotional difficulties to why I remained unchallenged in school. By sixth grade I was isolated, kids bullied me, and I was so depressed that my parents helped me find another school— luckily, I got into an arts program that helped me flourish.

In the 1980s, there was no label for my particular constellation of genius-level academics and social lagging. I was a model student: shy and gawky, with a few friends. Getting into an arts-focused school enabled me not only to express myself through artistic outlets, but to find peers who were more like me.

If your girl has particular interests that can be nourished through any outlet, find it and help her pursue it. Recognize that her peers may not be the kids on her street or in her school—or even her age. If she gets along better with an adult mentor, facilitate that.

I didn’t grow up with a label and imagine that being diagnosed as a child can bring extra support but also limitations. I spoke with someone at the Asperger/Autism Network1 who told me that a school-age girl with my profile (strong academics, sensory issues hidden, socially behind but behaviorally compliant) would still be overlooked for an autism spectrum diagnosis.

I sought a diagnosis at thirty-two, after years of struggle. I hit suicidal lows in graduate school, where the social demands of marriage and academics became too much for me. Every autistic woman is going to be unique, and the staffer told me that many girls today are identified as autistic in their teens when high school pressures become too much, or they disclose abuse, or enter the mental health system (perhaps they self-injure or have an eating disorder—things which commonly co-occur with autism). Not every girl who experiences these things is autistic, but the links are important. Don’t compare autistic girls with boys or let any clinician or educator disregard how being autistic and female is a particularly challenging way to grow up.

Presume capacity.

Help her learn that her best qualities get that way by her hard work and persistence.

Don’t let anyone tell your girl that she is wrong for being herself. Help her love who she is when she is playing or studying or flapping or spinning or singing or painting or drumming or bouncing or screaming or crying or finding beauty in the most unlikely places. You can show her you accept that she is exactly where she needs to be.

I am starting in my late thirties to finally love who I am. I challenge myself to grow, and I value my perceptions of the world. I have a great job in IT where I consistently learn new skills. I am discovering how be kind with myself and stop letting the world dictate how I need to be. When I speak in front of groups, I occasionally encounter a parent who will tell me how different I am from their child. The implication is that they don’t believe I am autistic, or that perhaps they do not see their child becoming like me.

This closing thought is for parents like this (and if you’ve met me, you could be one of them):

Autistic women are engineers, mothers, farmers, artists, lawyers, activists, professors, welders, writers, chefs, gardeners, models, CEOs, advisors, knitters, singers, spinners, acrobats, poets, witnesses, lawmakers, locksmiths, and everything else. We have children at your school, and we are in your social club and your church. Allow your daughter to veer off whatever map you think she’s been placed on and let her discover that who she is doesn’t fit in any box—then celebrate that fact together.