Dawn Covino was eager to use the genetic testing service 23andMe to find out more about her family history and that of her twin son and daughter she adopted from Kazakhstan in 2007.
She submitted DNA for herself and the children in 2011, and learned more about herself than she ever imagined.
“I sent it in for the kids and I said, ‘I'm just going to do it on myself to see if it's accurate, see if it can tell me that I'm half Polish,’ ” said Covino, now 46 and living in Suffolk County.
“I get an email back: ‘Something's wrong with your sample. You listed that you're female, but you're coming up with XY male chromosomes,’ ” she said.
“And I'm like, what? That's weird.”
Covino sent in another sample and then got a phone call from a geneticist working for 23andMe.
“She asked me a few questions and she said, ‘I think that you have AIS syndrome.’ ”
The results confirmed Covino was intersex — a revelation that she said both made her head spin and answered questions she’s had all her life.
Intersex is defined as people with sex characteristics that may not line up with what is considered binary male or female bodies. These variations can appear in chromosomes, genitals or internal organs, and can be identified at birth, during puberty, or even much later in life. Intersex Day of Remembrance, also known as Intersex Solidarity Day, is on Nov. 8 to raise awareness about the issues faced by the intersex community.
“You think you know yourself, right?” said Covino, who was 38 at the time. “It also gave me a sense of relief. I was like, 'wow, there's a name to this.' All this time, I thought I was the only one and now maybe I'm not.”
Who am I?
Covino learned from genetic testing she has a form of androgen insensitivity syndrome, or AIS, which falls under the intersex umbrella. It occurs when babies are born with testes and XY chromosomes, typically found in what is considered a binary male body. However, their bodies don’t respond to hormones such as testosterone (also called androgens). According to the U.S. National Library of Medicine, AIS affects sexual development before birth and during puberty.
Covino said when she was 15, she noticed she wasn’t “developing like a normal teenage girl.” She was scared and confused, and felt like she couldn’t ask questions of her parents and doctors. Covino said she underwent surgery to remove her undescended testes, but didn’t know the specific nature of the procedure at the time.
“I think now the medical community understands a little bit more, but back then, the standard practice was to just remove them,” Covino said.
She said her doctor told her that she wouldn’t be able to conceive children. However, “they didn't give me a name to it.”
“I felt like a freak. I felt like there was something wrong with me. I felt different, I felt like my body was different, and it was really hard. I went through depression and anxiety.”
Covino, who grew up in Ronkonkoma, said high school was especially difficult. “I was bullied because I had low self-esteem when I was little, and I think it all ties in.” She said that knowing she was different from her peers became the “focal point” of her life.
Her mind was full of jumbled thoughts, among them, “Am I ever going to get married? Is a man ever going to want me?”
Covino is now happily married, and has found the intersex community.
The “I” in intersex is part of the LGBTQIA+ acronym — with the other letters standing for lesbian, gay, bisexual, transgender, questioning/queer and asexual. When people learn about intersex, the conversation is often centered on surgery and peppered with medical terminology.
Hans Lindahl of San Francisco is hoping to broaden the discussion. Lindahl, who identifies as intersex, is the director of communications and outreach for interACT. The national organization advocates for intersex youth in law and policy, does media consultations and raises awareness. Additionally, interACT has a youth program that provides resources to young intersex people.
“It's definitely not common for intersex people, even now, to hear the word ‘intersex’ from doctors or to come across that word even when they're starting to understand how their own body is different,” Lindahl said.
“And I think that that is probably not a coincidence. Intersex is a fairly recent term and it also speaks to community, and it's a term that people have taken on to find each other and to reclaim their bodies from being completely medically controlled.”
Intersex surgery, such as the removal of ovaries or testes, is controversial. Many intersex advocates say these surgeries are mostly for aesthetic purposes and can be postponed or not undergone at all. There is also the matter of consent — the surgeries are sometimes done on babies and can lead to more surgeries, struggles with gender identity and mental health issues.
Many doctors believe these surgeries are medically necessary and that the procedures have evolved over the years. Dr. Lane Palmer, the chief of pediatric urology for Northwell Health who published an article on the push to ban intersex medical intervention, said that hospitals such as Cohen Children’s Medical Center (which is affiliated with Northwell) use a multidisciplinary approach with intersex individuals.
“The issues are very complex — not only are they physical, but they're also psychological and emotional and social,” he said. “At Cohen's, there's a multidisciplinary group that consists of pediatric urologists, endocrinologists, psychiatrists, social work, genetics.”
“They are each unique, so they hear all of the options.”
This month, a bill was introduced in the New York City Council that seeks to inform parents of intersex children. It would raise awareness surrounding treatments that are medically unnecessary for infants born with intersex traits.
A State Senate bill in California is expected to be considered next year, under which doctors and parents would not be allowed to go forward with treatment or surgery on intersex minors unless it’s medically necessary, such as if a child were unable to urinate. Intersex advocates support the bill, while some doctors argue it’s too restrictive and interferes in a parent’s decision with their doctor.
Lindahl and Palmer agree that the best advice for an intersex person considering any option is to ask as many questions as possible.
On a local level, David Kilmnick, president and chief executive of the LGBT Network on Long Island, said the organization provides intersex education and awareness as part of a larger program. The program is offered in schools, workplaces, and houses of worship, Kilmnick said.
“I started this organization 26 years ago and in all of those 26 years, the number of folks who identify as intersex is small compared to those who identify as LGBT,” he said.
‘Who I am’
When Covino started doing research about being intersex, she joined a support group for those with AIS and has attended their annual summer conferences.
“It's definitely nice connecting with other people because it's rare, but it's not as rare as people think,” Covino said. “They say that if you know someone who's a natural redhead, then you probably know someone who's intersex, but you just don't know because you don't see it.”
Estimates on how many people are intersex vary, in part because the definition of “intersex” is so wide-ranging. There are more than 30 specific intersex variations, according to interACT. Some doctors, such as Palmer, say that 1 in 2,000 people are born with intersex traits in the United States. Lindahl and other advocates say there really isn’t an exact number.
Covino said she doesn’t personally know anyone on Long Island who identifies as intersex, but formed "immediate connections" when she's met up with people from her support group who live elsewhere.
She and her husband, Robert Covino, attended SUNY Oswego at the same time but didn’t meet until years later through mutual friends on a cruise. Covino said she had been looking forward to the prospect of adoption, and Robert was, too. They spent “months and months” filling out all of the paperwork together, and the waiting game was “horrible,” she said.
Finally, their opportunity came. Or rather, opportunities.
“We get the call [from the adoption service] and they’re like, ‘Would you be interested in twins?’ And we were like, Oh, my God, of course. Yes.”
Covino gets emotional when she talks about meeting her son and daughter for the first time.
“I finally had them in my arms,” she said. “It was right before their first birthday when we got them. It was very special.”
When she first learned about AIS, Covino struggled with how she would tell her husband. One night when they were out to dinner, she said, “I have to tell you something.”
Then, she just told him. He froze.
“He’s like, ‘Oh, I thought you were telling me you had cancer,’ ” she said, laughing. “He was relieved. To me it was this huge deal and he was just like, ‘OK.’ ”
Now, Covino helps children and young adults with disabilities overcome challenges as a psychologist at Nassau BOCES. “I just knew that I always wanted to work with children,” she said.
Covino said she hopes that students, including her own kids, start to learn about the intersex community in schools, and believes it should be included in health curriculum.
“It should be talked about, because you shouldn't be made to feel like there's something wrong with you,” she said. “This is just a part of life. And I’m at a point now in my life where I'm just like, all right, this is me.
“This is who I am. It doesn't make me who I am. There's so many different parts to me.”