Autism Interview #142: Joey Murphy on Women on the Spectrum and Late Diagnosis

Joey Murphy is a freelance writer and writing coach. She teaches at the University of Pittsburgh and hosts a podcast targeting women on the spectrum who were diagnosed later in life. This week she shared how a late diagnosis helped her learn to listen to her needs after decades of trying to meet the expectations of others.

You’ve described your diagnosis as transformative. In what ways are your talents and energies used now that they weren’t prior to your diagnosis?

I don’t know about “talents” per se, but my energy level and the quality of my life have both sky rocketed. As I prepare to turn 50, I am definitely having the happiest and most “well” period of my life, and much of that is due to the re-evaluation of the way I live my life that an ASD diagnosis triggered.

I’m also very hesitant to talk about “talents” and how I use them because it really places emphasis on the NT paradigm of productivity within a capitalist framework. A huge part of the stigma that ASD folk face is around productivity- our energy levels keep us from being as “productive” in work or school; there’s a lot of cultural bias against the ways that we need to take care of ourselves: rest= laziness, quiet = antisocial; ABA therapy is driven by the goal of achieving uniformity of behavior and communication because normalizing/standardizing is more conducive to commodifying human labor. These preconceptions are always hanging over the heads of ASD folks: we will never be fast enough, good enough, productive enough to keep up. It reinforces the idea that we are failures by most measures in a society that only values earning power. Even assuming that we have a  “Talent” also promotes the myth that ASD folks are likely to have some sort of savant-like ability that makes us more palatable to NT society.

The bigger take-away regards the ultimately self-sabotaging energy expenditures that I stopped engaging in. Prior to gaining awareness of my autism, I spent a tremendous amount of energy trying to seem the same as everyone else. This ultimately meant that I was tuning out or stifling awareness of my own needs. For instance, an office environment can be very taxing: the florescent lights, the whir of computer fans, your co-worker’s perfume—all of these sensory issues levy a serious tax on me. I used to collapse after a day working in an office, and really just feel like a terrible person because my housekeeping suffered, and I often had no energy for anything. Prior to knowing I was on the Autism Spectrum, I would, as teachers and parents had told me, tell myself that I was just imagining the discomfort that those things caused. Essentially, I worked to mask my sensory sensitivity issues, which doubled the energy “tax” on my system. Now, I’m able to recognize the very real toll on my energy and health that irritating these sensitivities creates, and I have become much more able to identify them and avoid or mitigate them. My diagnosis has allowed for the insight to recognize real issues, and has given me the “permission” to attend to them and, in some cases, advocate for myself.  I have a lot more energy to spend on other, more useful things. 

I also spent a lot of energy trying to be a “social” person. The idea that becoming popular, or being a social success, was reinforced as the ultimate goal, the best way to prove I was “normal” since I was very young. It never occurred to me to question that, and I spent a lot of time trying to develop a wide and varied social network- even though I really craved being a homebody and didn’t find most people very interesting. It was what I was supposed to do! I’ve really taken my foot of the gas for that initiative and focused more on enjoying activities and people that I am naturally drawn to.  Quality over quality is what I shoot for now.

You wrote in a recent article that upon receiving a diagnosis at 42, “My hope was that the diagnosis would open up access to support and therapy for executive dysfunction and sensory integration. It did not.” Was it difficult to find service providers for adults? Was it difficult finding insurance coverage because of your age? What exactly were the stumbling blocks you encountered?

I don’t know if insurance would cover services, because no one has developed services for newly-diagnosed adults. Services are focused on childhood intervention, though there seems to be more awareness in terms of transitioning autistic children in young adulthood with support. 

The best support I’ve found is a garden-variety therapist who is familiar with ASD in women. Not having to educate or convince your therapist is a huge win, you can get down to treating the anxiety, depression, or other symptom much more quickly. It’s critical that your therapist have an understanding of the interplay of ASD with other mental health challenges. A therapist who doesn’t grasp that untreated ASD (treated too, possibly, but I can’t speak to that) can lead to depression and anxiety isn’t going to be helpful because it’s 100% necessary to place that anxiety and depression in context.

The constant, repeated injuries from social rejection, alienation, and just not “measuring up” are a recipe for anxiety and depression. 

You’ve described undiagnosed autism as “a sort of baked-in, recurring trauma.” Did this recurring trauma lessen as you entered adulthood? After a receiving a diagnosis?

No, it really didn’t lessen. I would get a handle on one level of skills only to graduate to a new level where I was a beginner all over again and making terrible social mistakes. The thing about social mistakes is that you don’t know you’ve made one, and so it’s always a surprise, like a bomb going off, when you are called to task over it. 

Coworkers, peers, etc., can’t grasp that we literally don’t know/can’t read all the social cues that everyone else navigates so seamlessly, and they usually come to the conclusion that we’ve intentionally committed the mistake because we don’t care, think we are superior, dislike them, etc. To readers, this may sound like something to shake off, but the truth is that there are real career ramifications for failing to achieve in-group status at your workplace. In addition to that, a huge amount of non-social task instruction relies on people “just knowing” how to do certain things because their brains approach information and hierarchy and sequence very similarly, and so they have a shorthand for how to go about doing things. ASD folks have a different approach, cognitively, to storing and finding information so our “just knowing” is different, and for some reason it is incredibly important to NTs that regardless of whether or not we arrive at the same result that they do, that we complete the task the way that they themselves would have completed the task- there’s a lot of getting in trouble because you didn’t do something the way the boss thought you should- even if the result is fine. The baked in trauma comes from being constantly surprised that some small thing you did has created a somewhat explosive situation around you. 

Have you been able to adopt a positive Autistic identity since your diagnosis? If so, what were some important steps to get you there?

I’m not entirely sure what you mean by a “positive Autistic identity.”  The diagnosis certainly helped to neutralize a lot of internalized negativity about my identity. It’s hard to have any kind of identity for yourself when you’ve spent a lot of time trying to project a manufactured identity in order to fit in, and you’ve gotten a lifetime of feedback that you needed to try harder to be like other people, that you were never really quite good enough. Really the first step is a big one, and it’s one you repeat over and over: you learn to unlearn all the scripts and prompts you’ve been running, you learn to listen to your inner-self and your body. Do I like this environment? Do I like these people? Am I physically comfortable right now? What is my body telling me? What does my body need? You learn to tune in to all of those things instead of letting all of the “supposed to” rules dictate. You remember what you like before all the pressure mounted to perform like the other kids–who were you before your natural instincts were interfered with? It’s a long process, and it makes you reconsider even your own idea of who you are.

How did you become involved in freelance writing and teaching? What do you like most about your work?

I was encouraged to be a writer when I was a kid, but I sort of had refusal about it – in some ways because of all the other things that I didn’t really like that I was encouraged to do. In my working life, no matter what my official job title was, I always wound up doing the writing, so I went back to school in my 40s for an MFA in Creative Nonfiction. 

I find the teaching elements the most fulfilling. Looking back, I realize that I had a LOT of really generous teachers in high school and college, and that their generosity in educating me (often way above and beyond the call of duty) is what made all the difference in my life. A good Liberal Arts education can save your life, seriously.  Having the ability to contextualize your life and to apply perspective to the events in your life is the difference between a satisfying life and a life that is experienced as a disappointment, regardless of your career. So many teachers, well one teacher in High School, and several in college, really gave me extra time because they could see I was struggling, not necessarily with the coursework, but with the world. They took it upon themselves to show me how the coursework and the world worked together to make sense, how the dots connected. Teaching brings me out of myself in ways that I did not anticipate. I honestly thought I would be intimidated by the students–have flashbacks of my own awkward classroom experiences, have periods of episodic muteness, etc…but exactly the opposite happened, maybe because of my advanced age as a beginning teacher. Instead of seeing a room full of intimidating strangers, I saw a room full of worried young people who were desperate to understand the world, and I remembered my own college freshman self, and the amazing professors that took one look at me and offered what they knew I needed, without embarrassing me for not already knowing. When I have the opportunity, even in just small ways, to offer that kind of support and to foster that kind of interest in the Liberal Arts, even if it is just one student every couple of semesters, I know that I’m doing the most important thing I could be doing. 

Can you describe some of your advocacy work for Autistic women and why you think it’s important (your podcast, writing, or anything else you do)?

I think sharing stories is important for any people, especially marginalized or erased people. Autistic Women are marginalized, and our history has been muted by research, diagnostic profiles and treatment protocols that don’t include us. Sharing our stories is a way offering support to other women who are struggling; it’s a way of building up anecdotal evidence to point researchers towards; it’s a way of normalizing ourselves to ourselves.  It’s a way of creating a community and a space in the world for ourselves.

My advocacy work is really just getting going. I’m a slow mover, I need to absorb things slowly and digest what they mean. The Public Source essay was my first attempt at publishing anything, and the response really blew me away. The quantity of emails and the reach of the essay were both amazing. I got letters from all over the world– and you have to remember that this was a local Pittsburgh PA publication– and there was a palpable need for connection and a dire need for information from most of the women I heard from. There are, today and a year ago, a fair number of groups and blogs and podcasts, but still, here were women who were being exposed to the notion of adult women with autism for the first time, and it was resonating with them powerfully. So, it was clear to me that there could never be too many groups or blogs or podcasts around the topic, and that my style of combining personal essay/memoir with reportage was meaningful to people. So after a long think about what it would cover, what it would be about and how I would do it, I recruited my friend Kerry (who I noted in the Public Source essay as the school friend who basically told me I was autistic) to be my cohost for a podcast aimed at mature women on the ASD spectrum.  Kerry herself was diagnosed not long after I was, and the reason I asked her to cohost is primarily because I thought that was a great example of how many undiagnosed girls there must have been in our generation– our entire grade school wouldn’t have had more than 200 kids at any one time. I also thought the opportunity for us to sort of serve as each other’s witnesses would be valuable– so many adult women are treated with disbelief, if not ridicule, when they ask to be evaluated for ASD, or they broach the subject with a therapist that the idea that we had front row seats to each other’s autistic childhoods seems really powerful to me. We are bringing along proof! We also present very differently, which gives weight to the idea that there is no single profile of a woman on the Autism Spectrum. 

We’ll have our first episode out in August [which can now be accessed here], and the podcast will be supported by a website featuring editorials, essays, memoir and reportage by Kerry and I and by a hopefully ever-expanding roster of autistic women. 

What advice do you have for newly-diagnosed adult women?

Listen to your body, remember who you were before everybody started trying to make you someone else.

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