How Twins Born at 25 Weeks Are Growing and Developing

Liz Johnson. Photo by Rialin José.

by guest blogger, Liz Johnson.

I knew I was non-binary before I knew I was autistic. But neither were surprising to me, truthfully.

I am not the first, and I’m certainly not the last, to be at this intersection of identity. 

Research from a 2020 study cites gender-diverse people are three to six times more likely to be autistic than those that are cisgender.

Before I even knew I was trans or autistic, I knew myself to be strange – both because other kids called me that, and because it was one of those lingering suspicions. But I owned that early, befriending fellow playground weirdos and saying “thank you” anytime another child would bestow the word “weird” upon me in an insult. I had an understanding that being a little odd would always feel more comfortable to me than changing parts of myself that I cherished to fit an expectation of normalcy. As I got older, this internal acceptance of difference, though sometimes hard-fought, made it easy to interrogate, accept, and love my non-binary identity. Early on, I understood the expectation of heteronormativity – the societal expectation to be heterosexual as the standard – already having come out as bisexual at thirteen. It was no shock the same normative standard would apply to gender. 

I remember feeling like, as much as I experimented with clothing, I wasn’t getting the gender euphoria I wanted. The absolute joy I got when people saw me as my full self in other facets just wasn’t clicking when it came to my gender. Long curly hair, a girlish nickname, and she/her pronouns just weren’t feeling suited to me – like a sweater I could admire on somebody else but fit me all wrong. Research being a favorite dual purpose coping mechanism/hobby of mine, and human psychology and sexuality being an intersection of special interest, I dove into researching why I felt the way I did about gender. A deep dive through the internet, combing through explanatory breakdowns of queer theory, to expansive lists of gender identity labels, left me to land on simply identifying as the label I felt suited me best – non-binary. I had friends who were having a lot of the same feelings. When I shared this identity with them first at seventeen – asking them to use my new name, use gender neutral pronouns – it was a safe way for me to confirm that being non-binary feels like home to me. I was lucky to have a supportive family as well, being surrounded by a community that supported and affirmed me, I could truly be myself. I think this identity and my relationship to it has grown with time. As I get to know myself better, I live in it more fully. It was the right fit then and it is the right fit now.

Liz behind the scenes of a music video. Photo by Rialin José.

I was diagnosed with Autism Spectrum Disorder just this year, at twenty-six. I got here after similarly winding rabbit holes of research and a steady influx of my community support. I’m still settling into it all, but it definitely made so much of my life make more sense – in a lot of the same ways finding the words for my gender did. But beyond that, understanding how some of the idiosyncrasies of my mind worked was such a relief. I already had a diagnosis of ADHD given at twenty-one, so neurodiversity isn’t a stranger to me. In fact, across my circles of friends, most of my friends were neurodivergent anyway in the same way that a lot of my friends are queer and trans too. We tend to find each other somehow! My autistic friends were intrinsic to helping me understand myself as an autistic person in addition to having ADHD. Again, being a sounding board for my feelings just as the times in my teens when I had been processing my gender. My family showed up again in a new way, some of them asking the same questions about behaviors and feelings they had day-to-day, eagerly awaiting my assessment results. I was happy to be the person that could deliver the news that I was autistic, and start conversations on what that not only looked like for me, but be a support for my loved ones wondering what it looks like for them. 

Access to the information to get the understanding of myself has come from a combined force of my support system, wider community of people who share my identities, and the internet as a whole. Looking back, it was vastly easier to uncover and affirm my gender identity than it was to gain an autism diagnosis. People assigned female at birth have a harder time getting diagnosed. “A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic” (Hull et al. 2020). Not every person’s experience of autism will look the same. I mask highly, and the way I stim with finger tapping and knee-bouncing, just as an example, can be overlooked as a stimming behavior. I’m learning more about how I can feel at home as an autistic individual, and the autistic community around me is instrumental in that. 

There is an intersection of queerness that aligns with one of the great strengths of neurodiversity. Both communities value questioning normative standards and challenging the societal expectations put on us. The kind of weirdness I’ve always felt for being different than the expectation is not only understood by trans and autistic people alike but, more often than not, celebrated by both. I celebrate it, too. Neurodiversity manifests in many ways as does gender diversity. No one individual’s experience with gender, nor being autistic, will be exactly the same. Existing on the spectrums of both empowers me to be my fullest and truest self, and I’m inspired by all the people who join me at this intersection. 

Liz is a queer & disabled writer, filmmaker, and multimedia artist. They are a Columbia College Chicago graduate and current freelancer with a broad portfolio, and pride themselves on being a jack-of-all-trades (and master of a few).

As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a film class in high school, but he eventually gave in. Years later, he admits his mom was right – taking that class inspired a new passion with the medium and launched his career. “I took the class and absolutely fell in love…I think, on a really basic level as humans, we are drawn to [it] and we can’t help but listen to what’s happening on the screen,” Alexander explained.  

Now an award-winning filmmaker and disability-rights activist, Alexander was recently featured in LA Weekly Magazine for his documentary, The Last Taboo. The documentary explores the topic of sexuality and intimacy from the eyes of disabled adults. Alexander has Cerebral Palsy and uses his own experiences and the true experiences of others to inspire his work. His other documentary, The Wounds We Cannot See, which shares one woman’s real battle with addiction, PTSD, and mental illness, is available for purchase on Amazon Prime Video. 

Alexander described how filmmaking took the utmost priority in his life at an early age: “I didn’t really have a ton of friends in high school or a lot of room to socialize, so I was just like, ‘I don’t need people’ – I am just going to focus on what I am good at. So, all through high school, I made films.” 

That focus paid off. “At the end of school, I got very lucky because I caught the attention of a production company,” he said. That company saw Alexander’s work and immediately offered to finance his next project. From there, his career began.  

When asked about his connection to Easterseals, Alexander laughed, “I really think Easterseals is in my blood!”  

It was Alexander’s parents who got him involved with Easterseals Massachusetts. He recalled, “My parents were like, okay, we have a child with disabilities, what do we do? What kind of services are out there? And Easterseals was there for [them].”

Alexander on location filming The Wounds We Cannot See.

Alexander shared, “A lot of the technology that I used was directly from Easterseals, so I started working with an Easterseals technology specialist when I was really little, and then that continued as I got older and grew up.” 

Alexander has one thing he wants everyone to take away from his story: “I am only where I am today because of a lot of people who helped me along the way, and I think that is a very important lesson, not just for me or people with disabilities, but a lesson to people in general…No one gets where they are on their own. Everyone must have moments where they have to look back and say thank you for all your help.” 

Alexander’s disability advocacy continues the spirit of helping others along the way. His latest project, a YouTube series titled Life with Cerebral Palsy | Q & A, is described on his film production company OUTCAST Productions’ YouTube channel as “Everything you wanted to know about living with a disability, especially cerebral palsy, but didn’t know how to ask.”  

To keep up with his continuing work, you can follow Alexander on Instagram, @realalexanderfreeman. 

It’s not every day you share the stage with a rising star in the television world, but it happened for me!

Ben speaking at the Capitol Visitors Center

In Washington, D.C., I had the distinct honor of participating in the release of Easterseals’ brand-spanking new “State of Disability Equity and Access,” a special report showcasing the improvements made for the disability community since the signing of the Americans with Disabilities Act 33 years ago. More importantly, the report serves as a call-to-action for the necessary improvements to ensure full inclusion for future generations – a compelling reason to travel 12 hours by car to D.C., I’d say.

On stage at the historic National Press Club, I joined the transportation panel, moderated by MSNBC’s Symone Sanders. She’s incredible, and if I’m being honest, I felt right at home on stage interacting with one of television’s most popular hosts. I’ve never met an unfriendly microphone! Our panel discussed developments that have eased travel for people with disabilities, but I focused on the importance of improving the airlines to be more accessible for wheelchair users.

This isn’t a new story. A decade ago, I traveled to Washington, D.C., with a plan and a petition, advocating for more accessible airlines, desiring a system where I could fly without having to get out of my own wheelchair. The reality is, as I told The Advocate, I haven’t flown since my injury – it’s too dangerous. The current system risks major harm to my chair, and even possibly long-term health concerns. It’s not right, and I’m elated that Easterseals has joined this fight for flight!

Enjoying the Lincoln Memorial at night

Prior to my on-stage, under-the-lights discussion with Symone Sanders, we officially unveiled the report during a press briefing at the Capitol Visitors Center – a fairly new addition to the Capitol Building. Tucked inside a room that has been used for major press briefings, I spoke alongside Easterseals CEO, Kendra Davenport; Jessica Tuman, VP, VOYA Cares; Ehrhardt Preitauer, president and CEO, Caresource; and outstanding disability advocate Emily Ladau, and Kathleen Perez of the Coelho Center, who helped produce the report. Boy, was I in good company, with a group of passionate inclusion activists assembled in DC with a vision for the future. Every time I travel to D.C., something special happens – this time was no different.

Speaking of special, for the first time, our group visited the Lincoln Memorial and laid our eyes on D.C., at night, where you can actually see the reflection of the Washington Memorial in the reflecting pool. We saw and snapped a photo with Cory Booker as he was leaving the Capitol. I was even in the same hotel, the Washington Hilton, as the President of the United States!

Meeting Senator Cory Booker

Yep, when we arrived at our hotel, the woman behind the desk asked us, “will you be leaving the hotel in your car tomorrow? If so, it will be difficult if not impossible, as this place will be crawling with Secret Service.” I had to ask, “why is that?” The woman replies, “the president will be here.” My mother retorts in a very serious tone, “the president of WHAT?” The woman replies, “the President of the United States, ma’am.” Only in DC! And you better believe I worked my way into the room with President Biden!

What a trip. Sharing the same room, albeit a large conference, as the president, sharing the stage with a television star, observing the reflection pool at night, talking with Cory Booker (who, I might add, was a very kind gentleman, chatting with kids from Indianapolis before snapping a photo with me), being with my Easterseals friends, and hanging with my Change for Balance colleagues as we worked the Easterseals forum. It was absolutely another successful trip to our nation’s capitol.

Overall, my hope, and the hopes of every single one of the panelists, advocates, and champions as a part of this experience, are for the next generation of people with disabilities. Our hope is that children with disabilities will see the airlines not as a barrier, but an opportunity to explore the world. Our hope is for teenagers with disabilities to dream endlessly about their future careers, not seeing corporate America as unattainable. We have hope.

I’m a dreamer, but I believe, together, we can create a more inclusive world for all of us.

But then again, maybe I’m just starstruck from my time on stage with Symone.