Anxiety can be challenging for anyone to experience – it can keep you from doing the things you love, meeting new people, or often from pursuing new goals. Now imagine these typical hardships being paired with sensory challenges. Self-advocate, Raven Pressor, shares her first-hand perspective of experiencing anxiety alongside ASD and shares some advice on how to support individuals like herself dealing with this common comorbidity.
Raven, thanks so much for speaking about this personal topic. Can you tell us a little bit about yourself?
I’m Raven and I’m 36 years old. I live with my parents, and my hobbies include video games, crochet, knitting, reading, and spending time with my cat and two geckos. I have ASD and anxiety, and was not diagnosed with ASD until I was about 24 years old.
How would you describe the feeling of clinical anxiety to someone who has never experienced it?
For me, it first feels like I’m a little shaky and edgy. It can escalate into a queasy stomach, racing heart, tight throat that makes it feel hard to breathe, lightheadness or dizziness, and a weird tingly feeling in my face and hands. These symptoms occur during a full-blown panic attack. There are also emotional symptoms too, like an intense desire to return home if I’m out (a fight or flight response) and generally afterwards, some amount of shame at the loss of control.
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While reading the article “How to Meet Autistic People Halfway” from the New York Times, I was impressed by how accurate its portrayal of the social issues autistic people have was, as I have faced many of them myself. I have found it hard to make friends, and though I’m happy with my small circle of friends now, it is harder for others to accept that I only have a few really good friends. My mother reminded me recently that I used to take a book out on the playground and read. It bothered her more than it bothered me. I was teased, and my theory at the time was I’m better off alone, then I won’t get upset.
One of the things that really struck me about the article is that they discuss eye contact, and how hard it is for many autistic people.
“Take eye contact. Some autistic people say they find sustained eye contact uncomfortable or even painful. Others report that it’s hard to concentrate on what someone is saying while simultaneously looking at them. In other words, not looking someone in the eye may indicate that an autistic person is trying very hard to participate in the conversation at hand. Unfortunately, this attempt to engage often gets interpreted as a lack of interest.”
This is something I’ve really struggled with, and have worked hard on. It still is difficult for me at times, especially when I’m upset or angry. I’m lucky that most times when I have issues regarding eye contact, I manage to explain it, and am dealing with people who understand me.
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One highlight of our conference each year is our Straight from the Source series, a grouping of panels featuring individuals with autism and those closest to them. This year, we held an Autism at Work panel, a session for adults on the spectrum to share their experiences of joining and being a part of the workforce. During this panel, attendees got to meet Evan Spencer, Amy Kleinman, Angel Russo, and Tim Hughes, self-advocates with a variety of perspectives gained from employment. Evan, Amy, Angel, and Tim were kind enough to sit down with Milestones after their panel to share a little bit about the topics discussed and why they wanted to get involved.
Thanks so much for taking some time to talk to us today! Would you mind telling us how you first heard of Milestones?
Evan: My mom runs a support group that works closely with Milestones. I came my first year to the conference kind
of nervous, to see what was here for myself. I always thought it would be people my mom’s age who are working for individuals with autism, but then I saw it was also for individuals and that’s what sold me on coming back.
Amy: I’ve known about Milestones for I don’t know how many years. My mother and I had talked about coming to the conference for years; we have gone to Beth Thompson for some
help when we needed it. And finally last year, we were just like ‘you know what, we’re going to get scholarshipped and we’re going to go!’ Then this year, Beth asked me to speak, so we’re here again. And hopefully next year too!
Angel: Haley Dunn who is with Milestones, I knew her for a long time so she asked me to come speak.
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T-minus two weeks until #MNAC2018 and we could not be MORE excited about all the insightful, informative sessions this year! Milestones is especially thrilled about the outstanding line-up of self-advocates presenting, one being Raesin Caine, MS. Raesin is a self-proclaimed nerd for science, the arts, and learning new things whenever she can. Diagnosed just last year with autism, Raesin celebrated when she received the news. Since her diagnosis, Raesin has made it a personal goal to change the way people think about autism by counteracting negative perspectives of the disorder when she encounters them.
“If I had my way, I’d do away with the charity walks, puzzle pieces, and tragic language, and insist on reframing autism in a way that promotes confidence, ownership, and celebration (I’m imagining the enthusiasm you’d find at a drag ball or marching band extravaganza.)”
What initially got you interested in the Milestones Conference? Can you describe your first conference experience and why you wanted to come back as a speaker?
“Admittedly, I was starstruck by Temple Grandin, who has been one of my heroes since I first read about her back in the nineties in the book, An Anthroplogist on Mars. I was also curious about what I could learn at an autism conference since I’d never attended one before.
I had a lot to say on my feedback form for last year’s conference. I learned important things at some of the workshops, met great people, and absolutely loved Dr. Grandin’s talk. At the same time, I felt disappointed by the number of sessions offered by self-advocates. It’s important for self-advocates to see ourselves throughout the programming and for neurotypical people to listen to our perspectives, so that’s why I decided to submit a presentation proposal.
I spoke up in a couple of workshops during the question-and-answer sessions last year and a number of people pulled me aside to ask me more about my experience. Their reactions were a good reminder that parents, sponsors, and other attendees need to hear from self-advocates especially because we tend to be heavily outnumbered at autism conferences. I am certain autism conferences would proceed quite differently if self-advocates developed the full conference schedule, gave all the talks, and provided all the sponsorship.”
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If you told me five years ago that I would be a practicing social worker, I wouldn’t have believed it. Don’t get me wrong, it wasn’t that I didn’t want to become a social worker. Rather, I felt that it would be something that I couldn’t do because of my Autism. To be entirely honest, I took to heart some of the negative stereotypes and misconceptions people have about Autism. I felt like I could never support others because my eye contact is fleeting. From a young age, most kids learn that good eye contact is one of the most important skills for social interaction. My interests can also be rather specific, and I really enjoy sharing about them, but sometimes I have a difficult time telling when others want to change the subject. In all my years receiving Autism-related services, I had not once met a clinician with Autism. Since there were no models, I worried that people must not want a social worker who has Autism. It was during my time in undergrad that I met someone who had similar differences who was pursuing a career in social work. With that person’s support, I came to the realization that I would take a chance on my dreams and become a model for others who might wish to follow suit. I earned my undergraduate degree and applied for a master’s level social work program.
My early career assumption was that I would pursue employment in the realm of immigration or refugee services, but my curiosity got the better of me and I decided to interview at one Autism-related agency. That agency was Milestones Autism Resources. “Milestones serves clients with Autism and I have Autism, maybe this could be a good fit,” is what I told myself. I called Beth Thompson and within a week I had an interview. I arrived far too early than what might be considered professionally appropriate, the dress shirt (that my mother encouraged me to tuck in) was untucked because I found it to be too uncomfortable, and my interview consisted of an abundant amount of oversharing. Yet from the moment I walked through the door to the moment I left, I felt welcomed. I knew then that Milestones was where I wanted to complete my first year internship. I celebrated with my family when Milestones offered me a position as their Graduate Social Work Intern.
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