Like many neurotypical girls, I spent a lot of time growing up either reading or watching fairy tales in books or television. What’s peculiar about women on the Autism Spectrum is that our advocates sometimes mimic those white knights in shining armor; Meaning that someone on our care team will want to rush to our side and offer their help when we’re having a moment of sensory overload. In retrospect, I truly appreciate their concern. Now that I am 20+ years into my diagnosis, I am now asking you to listen instead of help.
Over the last 2 years, I have been actively mentoring young people who are also on the Autism Spectrum. Their abilities and interests are a spectrum in and of itself. As I work with them to figure out plans for their careers, I primarily take that and what accommodations are needed into account. These interests and accommodations require every mentee – especially female ones – to self-advocate in professional settings. In order to help us achieve our dream careers and live independent lives, I’m imploring everyone who advocates on behalf of a woman on the Autism Spectrum to take two major things into account.
Talking It Out When You Meet Us Halfway
First of all, it helps to understand that this condition should not be treated like a disease that should be pitied. In my humble opinion, having Autism Spectrum Disorder (ASD) only becomes a problem if encouragement and services aren’t provided after diagnosis. Women with ASD aren’t helpless. Not fitting the mold of what it means to be a typical girl or woman shouldn’t negate what we are capable of. Just because we have trouble picking up non-verbal cues and social norms doesn’t mean that we cannot achieve the same amount of personal and professional success as neurotypicals. When you interact with us, give us the benefit of the doubt if we struggle with interpersonal communications at first. For example: If we don’t understand when it’s appropriate to leave a tip for a server at a restaurant, take the time to explain these social norms to us in practical words. Use concrete directions so that we know what to do on our own. As you are teaching us the skills that we need for meeting social expectations, stop assuming that we learn social cues by observing what other people do.
Train Us to Be Our Own Heroes
If you really want to support a girl or woman with Autism, then train us to be our own advocates. In other words, encourage us to grow into women who can support or rescue ourselves. There’s still so many of us who don’t get diagnosed until later in life, if at all. In a 2018 report, the Autism and Developmental Disabilities Monitoring (ADDM) Network reported that “males were four times more likely than females to be identified with ASD (Baio et al, 2018, 2). In female-only support groups for women on the Spectrum, I am considered one of the unique Aspies that received a diagnosis as a child. Even now, most people are surprised when I disclose. More than one person has said “but you’re so eloquent.” I took this response to mean that since I appear to enjoy socializing and can maintain eye contact with whomever I am speaking with at parties, I don’t fit into the stereotypical “Rain Man” mold for a person on the Spectrum.
As you might tell with this sociable Aspie, some stereotypes don’t apply. In order to find out what being on the Spectrum means to us, might I suggest that you listen to us before automatically assuming that we are in need of whatever help that you can provide as a neurotypical? When I’m feeling anxious and stressed, I prefer going somewhere completely quiet by myself or going for a run alone. When I mention how I am feeling to someone that I’ve disclosed my condition with, sometimes their reaction is to automatically offer something that helps them. What you need to understand is that we’re not like you.
So, if you want to support us, understand that what helps you won’t always help us. Ask us questions about what being on the spectrum means to us. Start by asking if there’s anything specific that makes us feel overstimulated or unregulated. Asking us about what we do to cope in these overwhelming moments can also bridge the divide of what to do in those tense, overstimulating situations. Knowing the person leads to knowing what you can do to help them figure out how to help themselves. If helping means standing to the side as we flap or squeeze our hands in order to calm ourselves, then you are doing your part to help. I’ve said it before with self-advocating, but the “Advocating through Asking” approach applies to anyone who wants to help women with ASD.
In order for us to lead independent and fulfilling lives, we need to know how to care for our conditions ourselves. In addition to self-care, we need to learn how to speak up clearly and appropriately when the time comes to self-advocate. IEP meetings and support services don’t exist in every space where an Autistic woman might venture into. Any advocate should encourage these women to own their ASD as a strength and speak up for what they need in terms of care. It is this woman on the spectrum’s belief that these tactics are the best way that we can be successful.
If you would like to discuss this approach more, please follow up with me through email at firstname.lastname@example.org. For other samples of my work, please review my LinkedIn page: www.linkedin.com/in/thekatetrammell/.
Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ 2018;67(No. SS-6):1–23. DOI: http://dx.doi.org/10.15585/mmwr.ss6706a1.