This is me: I’m a 40-Year-Old Woman Who Never Had a Best Friend. (Caveat: I actually have had best friends during some periods in my life, and I’m no longer 40–so the title doesn’t fit, but the gist of the article does.)
Much of this describes me, Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome, by Tania Ann Marshall, as does nearly all of this, Samantha Craft’s Females and Aspergers: A Checklist.
This is certainly me: This is Autism.
And this is also me:
When I read accounts from autistic individuals or watch their videos, I see myself. I talk in such a similar way to Amythest Schaber. Same mannerisms. Same facial expressions. Same use of hands and arms and swaying movements when we speak. Our eyes are almost identical. And our young-sounding voices combined with the vocabulary and sentence structure of a college professor? Same. People tell me I sound like I’m twelve. Amythest is younger and much cuter and prettier than I am, but we are of the same type.
This is me, too:
This does not so much feel like me: Diagnostic Criteria for 299.00 Autism Spectrum Disorder, nor does this: What are the DSM-5 diagnostic criteria for autism? The DSM-5 criteria for autism emphasizes pathology: to qualify for a positive diagnosis, one must present “symptoms [which] cause clinically significant impairment in social, occupational, or other important areas of current functioning” (“What are“).
I know that I experience challenges socially, in executive functioning, and in other areas of my life, but none of these challenges present “clinically significant impairment.” They just mean that sometimes I need to prepare differently or in advance; sometimes, I will need more recovery time; and some things, like establishing and maintaining friendships, I just don’t really seem to be able to do. Is that a significant impairment? (Actually, yes. Upon reflection, I do feel I have “significant impairment” in the social area.)
The diagnostic criteria seem to imply that someone who is autistic cannot function, cannot manage a career, and cannot communicate with others.
I can do all of these things–some I’ve learned to do relatively easily, and some take a little more effort, but with the right combination of self-care and labor, I succeed in these areas at a high level. (Well, I don’t succeed in making and maintaining face-to-face friendships–I haven’t figured that out and it seems beyond me–but I generally succeed in communication.)
For the past six months or so, I’ve been considering whether to pursue an official diagnosis. My health care plan covers the costs. The city where I live has skilled neuropsychologists and a supportive network for autistic people. On the one hand, receiving a positive diagnosis would feel like being recognized and becoming visible after a lifetime of coping and masking. On the other hand, I don’t want to buy into the pathological perspective.
I recognize that the DSM-5 criteria was developed, in part, to help individuals receive the support they need, including qualifying for federal disabilities benefits. Given the strictures of our society and government, the criteria needs to be written in such a way that disabilities are recognized and identified: this is how people qualify for disability benefits and supports.
But for those of us who don’t need federal benefits (but may want accommodation and acceptance), the definition feels excluding. Or at least, it feels that the qualities I recognize as being specific to me are somehow flawed: an impairment.
I feel that my abundantly synaptic brain is a gift, opening me to new ways of seeing and being. By seeking diagnosis within the current medical model, I feel, in some ways, that I would deny this view in acceptance of the pathological perspective. In not pursuing a diagnosis, I feel like a rebel, true to myself–like I’m saying to the American Psychiatric Association, let me define this, please, not you.
And yet… the women whose faces I see in the bright shiny mirrors I shared at the beginning of this post are amazing, gifted, brilliant people who, in their lives and words, demonstrate the gifts of being autistic. They live and express themselves in ways that expand the clinical and pathological view. Their very lives are rebellious.
So, maybe I will join their rebellion. Or maybe I’ll stay outside the official diagnosis and rebel that way. Either way, I will embrace this definition of autism:
“Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.Nick Walker, “What Is Autism?”
Walker’s affirming definition rightly interprets the autistic person’s experiences as stemming from our abundantly synaptic brains.
Regarding social interactions, he continues:
“The realm of social interaction is one context in which autistic individuals tend to consistently be disabled. An autistic child’s sensory experience of the world is more intense and chaotic than that of a non-autistic child, and the ongoing task of navigating and integrating that experience thus occupies more of the autistic child’s attention and energy. This means the autistic child has less attention and energy available to focus on the subtleties of social interaction. Difficulty meeting the social expectations of non-autistics often results in social rejection, which further compounds social difficulties and impedes social development. For this reason, autism has been frequently misconstrued as being essentially a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the intense and chaotic nature of autistic sensory and cognitive experience.”Nick Walker, “What is Autism?”
It’s been about six weeks since I last worked on this post–and much longer since I first began writing it. In the intervening time, sparked by conversation with an autistic friend, I’ve begun to identify and explore some of my own ableism and the ways that this predisposes me to resist considering that I have disabilities. I’ve also begun looking more closely at my responses and interactions with others and how hard I work every day simply to keep things afloat. I’m on vacation this week, so I have a break from the steady social demands of the office, demands which, consistently, exceed my social capacity. I’ll write more about this in a future post.
At this point, I want to conclude by mentioning that the best pictures of what it means to be autistic come from autistic people. The “Nothing About Us Without Us” movement expresses this well. Do I want to know more, as an autistic woman and adult, what it means to be autistic? Let me look to the bright shiny mirrors of others whose neurology is more similar to mine for reflections of our shared experiences, rather than turning to pathological descriptions that seek to limit and define.
“Aspie-Quiz.” Rdos-net. Accessed 30 May 2019.
Craft, Samantha. “Females And Aspergers: A Checklist.” The Art of Autism. 10 June 2019. Accessed 3 July 2019.
“Diagnostic Criteria for 299.00 Autism Spectrum Disorder.” CDC. 26 Apr. 2018. Accessed 30 May 2019.
kristinabean. “The Autistic Operating System.” Little Thoughts: Meditations on Life. 3 Apr 2019. Accessed 29 May 2019.
–. “Seven Awesome Things About Being Autistic.” Little Thoughts: Meditations on Life. 4 Apr 2019. Accessed 29 May 2019.
–. “Seven Challenges of Autism.” Little Thoughts: Meditations on Life. 6 Apr 2019. Accessed 29 May 2019.
Malia, Jennifer. “I’m a 40-Year-Old Woman Who’s Never Had a Best Friend.” Woman’s Day. 12 May 2017. Accessed 25 May 2019.
Marshall, Tania A. “Aspienwomen: Moving towards an adult female profile of Autism/Asperger Syndrome.” 15 July 2018. Accessed 25 May 2019.
Schaber, Amythest. “Ask an Autistic #19: What is Neurodiversity?” Neuro Wonderful: Ask an Autistic. 13 Nov. 2014. Accessed 30 May 2019.
Walker, Nick. “This Is Autism.” Neurocosmopolitanism. 18 Nov. 2013. Accessed 10 June 2019.
Walker, Nick. “What Is Autism?” Neurocosmopolitanism. 1 Mar. 2014. Accessed 10 June 2019.
“What are the DSM-5 diagnostic criteria for autism?” Autism Speaks. Accessed 30 May 2019.
Wolff, Eli A. and Mary Hums. “‘Nothing About Us Without Us’ — Mantra for a Movement.” HuffPost. 5 Sep. 2017. Accessed 3 July 2019.