A glimpse into what life is like on the spectrum, as told by the women themselves
This week’s #WeekendWatch is an interview with five women with ASD (Autism Spectrum Disorder), who open up to give folks a “behind the scenes” glimpse of what it means to live on the spectrum. This piece is particularly important because boys are four times more likely to be diagnosed with ASD than girls; not because ASD is more common in boys, but because it often presents differently in girls and methods of testing haven’t been developed to account for this (source: Children’s Hospital of Philadelphia). “A lot of women who are autistic are not diagnosed until their 20’s or 30’s, or even beyond,” says Amy.
“A large part of this is because the way that we diagnose autism is by using criteria that were created observing boys. And autism looks different in girls and women than it does in boys,” Amy continues. These delays in diagnoses mean that girls and women go for much longer without the help, support and treatment, they need. Morénike, another interviewee, was first diagnosed at 32 – after two of her children received their diagnoses. “Women are under-diagnosed – Black women especially. And I think there’s this idea, you know, of the ‘strong Black woman’, and you hold down the family and you’re just able to keep going and not address whatever needs you have – you know, your support needs, and not prioritize your self-care. So we just kind of slip through the cracks for the majority of our lives.”
How autism “looks” (or doesn’t) has definitely been a challenge for those who struggle to understand what it means to be on the spectrum, since it can often present as an “invisible” condition. Speaking to this, Kirsten shares about the internal heavy lifting she’s always doing, that other people might not be aware of: “All the little things that everyone does unconsciously, autistic people do manually – so that adds up. What I’m doing with every part of my body, I’m – to some degree – aware of, and trying to do.”
Another major takeaway for us in this interview is the language clarification (and possible adjustment) shared by Amy: “The words “high-functioning” and “low-functioning” are used by people who are talking about autism from an outside point of view. So instead of using those words, we tend to say “minimal support needs” and “high support needs” to describe the different levels of the spectrum that people fall on.” Noted 😉
There are also some very important insights here regarding dating and sex for folks with ASD. One of the women explains: “You invite a girl back to your apartment to ‘watch a movie’, and she thinks you’re just watching a movie. ‘Netflix and chill’ doesn’t literally mean ‘Netflix and chill’. That often does happen when you have someone who is inherently a little more naive because they’re so literal.”
Amy elaborates a bit on this: “People on the autism spectrum, especially women, are more likely to experience sexual assault or some type of violent incident than the neuro-typical, non-autistic population. We are very vulnerable; we definitely can be more trusting, because we are very honest and upfront people, so we don’t think that other people might not be so honest and might be trying to hurt us.”
But the women leave things on a bright note: “I think things are going to be a lot better for the next generation. I’m actually really hopeful. They are going to be diagnosing more, and there is going to be more social acceptance,” says Sybelle. Amy adds, in parting: “I would just love to see every autistic person living up to their fullest potential, whatever that is for them. Success is about your child growing up to be the best version of themselves that they can be, whoever and whatever that is.” xo