We know many autistic people have a circuitous route to diagnosis, and that many autistic people often have to overcome numerous challenges because they may not have access to support and therapies that have meaningful impacts on their academic, social, and family lives. This series highlights the experiences of individuals who have experienced a rocky road to diagnosis, raising the profile of autistic people in STEM and celebrating success in the face of significant barriers. Contributor Elinore Alms fills us in on Dr. Dawn Prince-Hughes biography and background here. In this post, Elinore shares excerpts of their email correspondence. Thanks, Dr. Prince-Hughes, for speaking with us!
Elinore Alms: In Songs of the Gorilla Nation, you showed us several of your personal poems. When did you begin writing poetry? Do you feel like this skill was put to use when you first began studying the gorillas?
Dawn Prince-Hughes: I started writing poetry when I was about six. Not surprisingly it was about a great loss at the time. My family had a lot of struggles; my dad came from a bad home and his brothers were heroin addicts, and for a while my mom wasn’t well, either. And, so, when we took a trip to Florida—having a good time, feeling so free, no fighting, and for me, of course, being out in nature—I just felt so happy and relaxed. I found a very special crab claw that was multicolored on the beach there. And, like most aspies, I get attached to objects that symbolize something for me, and the crab claw symbolized happiness. So when one of my visiting cousins stepped on it, I was pretty heartbroken, and I wrote:
I think I see reality quite lyrically so it was the way that I see reality that helped me with the gorillas at first. I think that lyricism is present in most people on the spectrum. That’s why when they interface with a world that’s very hard and materialistic, they need rules that are unshakable and unchangeable, because their birth orientation is to be a part of everything.
EA: What was your greatest barrier to college education?
DPH: The greatest barrier for me to get a higher education was that people had the erroneous assumption that I was not smart. I always felt like I was my best feature, and going into kindergarten they actually wanted to send me home because I was so bored. But just having to deal with school on a sensory level. The ringing bells, the loud children, sitting in hard chairs facing forward, being away from nature, the smells, the emotional overload coming in from other people. By the time I was in third grade I was so broken from withstanding this onslaught, I just faded away. I couldn’t think, concentrate, function. My third grade teacher thought I was defiant and mentally handicapped. By high school, I was really a shell. The only way to make it was to pretend no one else was around me, including teachers. The abuse and bullying were so bad that I lost any will. I walked out the door and hitched a ride down the highway. I was homeless for about 5 years. When I started studying gorillas informally, and met the research director at the zoo, he pressed me to start college. I flatly said no. I had PTSD from school. But eventually I went and blossomed…it was a lot different from grade and high school. I think this would be a good place to say: it’s generally going to be secondary damage to people on the spectrum that keeps them from going to college. Not getting needs met, physical and psychological abuse, and the general toxicity of modern life.
EA: You chose to minimally edit the essays in Aquamarine Blue 5 and said it was because you wanted the voices of the college students to come out. You write a lot, so I’m wondering if you’ve tackled your own college experiences yet. How many years were you in a traditional college setting? Is there something administrators could have done to ease this time for you?
DPH: I talked about college a fair bit in Songs of the Gorilla Nation, which by the way, that whole book was made possible by my essay in Aquamarine Blue 5. That entire chapter of Aquamarine Blue 5 is more about my college experience, oh, and I think a little bit about grade school. I think it’s the thing that people write more often about, pain and struggle and failure. Haha, it didn’t take me long to find out that I was really good at college. I related better to my professors than other students, which was helpful. As was having the other students want to work with me because they knew I was really good at assignments, and a good thinker in general. That was very validating. Instead of a negative feedback experience, I had a positive feedback experience. So I didn’t have a lot to write about the experience, except for Aquamarine Blue 5, because I knew many people had struggled to get to college or university and then continued or continue to struggle to stay there. I do think a diagnosis would have helped me make it to college, but it would have had to be way earlier for it to have helped me get to that point. That’s why I am sometimes frustrated when parents get an early diagnosis for their child on the spectrum and then don’t want to tell anyone because they don’t want their child labeled. I can guarantee a child on the spectrum will be labeled something, whether it’s willfully disobedient, mentally impaired, or worse names. And none of those labels or names comes with any services that are crucial to long-term success in life. I did write a compendium in the back of Aquamarine Blue 5 for strategies and services that any university could easily implement for students on the spectrum coming in.
EA: Did you have any known autistic peers in school? If so, how did you interact with them?
DPH: I didn’t really know any autistic people in school. Looking back, I know some people that were probably on the spectrum, but our coping mechanisms were very different and, of course, they had also been damaged and avoided people just like I did. The closest people I can look back at and say now, “they were probably on the spectrum,” are people that I did really well with in college. I think in general people on the spectrum do better in college, when they make it there, because they have great focus, generally are passionate about whatever subjects they’re studying, and don’t get caught up in the party scene or the social aspects of college as much. They’re there to learn.
EA: How did you feel when you were diagnosed at age 36? How might an earlier diagnosis have affected your college experience?
DPH: I addressed that above, but I will say that my overwhelming emotion about being diagnosed in my late 30s was that of validation, and relief. Because finally I knew I wasn’t alone, that my needs were valid, there were no further steps I could have or should have taken…
EA: Your degree is interdisciplinary, so you probably had to have a variety of classes. What were the more difficult classes for you? How did you get through them?
DPH: The toughest classes I took in college were the number based classes. I’ve had trouble with math since I was born. Grade school used to be a nightmare because they would give us those timed tests with memorized information, and I would be so overwhelmed by the energy of the people around me, the furious scratching of pencils, the fact that I didn’t understand numbers. I would just sit there and look at the page until the timer went off. People expected that I would improve with remedial classes when I started college, but that wasn’t the case. Even though I was a member of Phi Theta Kappa I was still going to the most basic math classes and failing. They finally sent me for some special testing which demonstrated once and for all I had a real math disability, and it got me out of those classes. It was one of the few times that I felt the same humiliation in college that I had in school before. I almost quit. It’s true, some people come in with the IEPs like the ones they got in grade school, and I think it helps a lot in terms of getting access to accommodations. But we can still do better.
EA: Are you happy with what you do nowadays? Do you have any exciting future plans you would like to share with us?
DPH: As far as projects go, I’m working on a new book. It’s called Hating Everyone: a Compassionate Guide. The subtitle is The Rise of Animal Sensitivity in an Insensitive World. It’s about the ways that I’ve grown to understand autism as a set of profound and ancient sensitivities that are needed more than ever in the world. We have gotten so far away from nature and basic primal living that people are sick, depressed, and feel like their lives have no meaning. This is the oldest disconnection, and it has made people mean as hell. We’re seeing it reach an absolute crescendo in the current political and global climate. While that goes on, the real climate that sustains us is burning away. So, in my book I tried to use anthropology, humor, and compassion to draw attention to the fact that things can’t go on as they have been, for anyone. In the book, I invite everyone to embrace those interconnections with nature, the planet globally, all the sentient beings around us – human, animal, and other – and also talk about the fluid nature of time and space as well as synchronicity and psychic connection. All of these I believe are spectrum phenomena, but they are also lying dormant and much-needed in the greater population.
Dawn Prince-Hughes struggled immensely as a young woman without a diagnosis. With an unwavering willpower, she made her passion her career. She was helped by many people who saw her talent and intelligence. She has been loved and embraced by her family and finds warm acceptance in the compassionate, ancient eyes of the gorillas. There is so much I can identify with in her story and the stories of other college students, from childhood struggles with peers to the relief of companionship with professors and frustration of uneven skill acquisition. I highly recommend both of these books to learn more about her and others’ journeys through higher education.
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