“You’re not special,” Dr. J. said in a soothing voice, as she helped my daughter walk unsteadily to the elevator. “No one here is ‘normal.’”
It was the first social event of the year for the neurodiversity program at Ellie’s new college. In an effort to fit in with the other kids, Ellie ignored her physical disabilities until they exploded. Then she ended up on the bathroom floor, dizzy and weak, staring at the ceiling. Thankfully, Dr. J., the director of the neurodiversity program who knows all about Ellie’s health challenges, found her, and helped her regroup.
Ellie has a long history of trying to act like she is “normal,” even when she feels deep down like she is different. For much of her life, Ellie didn’t talk about those feelings with anyone, including us, her parents.
Discovering Our Daughter’s Neurodiversity
Unlike some families, we didn’t know our daughter was neurodiverse for most of her life. It’s not uncommon for diagnoses like ADHD and autism to be assigned to young boys more frequently than young girls, especially for kids who are labeled “high functioning.” For the longest time, I thought ADHD looked like my hyperactive stepbrother, who literally couldn’t stop moving as a young boy. I thought autism looked like my niece, who struggled to talk with others, or my friend’s son, who was prone to acting out physically.
It wasn’t until Ellie’s junior year when we decided to try medication for ADHD, because Ellie admitted that she struggled to focus during school. Apparently, she hadn’t been able to focus for years, but she hid it by earning top grades and absorbing the material on her own. In some ways, Ellie’s intelligence worked against her, by camouflaging her disability and preventing her from getting help earlier. Her desire to appear “normal” meant that she never mentioned her distraction to anyone.
Ellie’s therapist taught us that some girls escape an ADHD diagnosis because their hyperactivity comes out in verbal, rather than physical ways. Rather than hitting, jumping or kicking, they might talk incessantly. Two years later, this same therapist helped us realize that Ellie is on the autism spectrum. My eyes lit up as I felt like someone had handed me the missing puzzle piece to explain the past eighteen years. For example, we had marveled at toddler Ellie’s ability to string together sentences with complex words and ideas. We concluded that our firstborn daughter was brilliant, a masterpiece of creativity and knowledge. At that time, I shook off the confusion about why Ellie seemed to talk constantly, often circling around the same subjects endlessly, like a dog gnawing a bone. As a new mom, it never occurred to me that this could be a sign of something neurologically different about my daughter. In 2005, I hadn’t even heard of the word neurodivergent.
Sixteen years later, I would begin to understand my daughter’s brain in a whole new way.
College Programs for Neurodiverse Students
Last fall, equipped with this new revelation about Ellie’s neurodiversity, I started a different kind of college search. While there were many factors that led to Ellie’s withdrawal from her first college, one missing piece was support for her as a neurodiverse student. Thankfully, a good friend (whose son is autistic) suggested that I investigate universities with established programs for neurodiverse students. Several universities have these types of programs; you can find one list here.
From my (limited) research, programs for neurodiverse students tend to offer similar support, with some variation. Their key elements include executive functioning support, social community, academic coaching or accountability, and training around independent living. Some programs offer peer mentoring, pairing neurodiverse upperclassmen with newer students. Some programs offer guidance around entering the workforce by helping students obtain internships, co-op positions, and long-term employment. Some even hold neurodiversity education workshops for faculty, professional staff, and potential employers. Overall, these programs train participants how to advocate for themselves, which includes executive functioning, social-emotional intelligence and interpersonal skills.
Originally, Ellie was lukewarm about limiting her search to colleges with these programs. She didn’t want her neurodiversity to define her.
But after a session with our family therapist, in which Ellie listed out what she was looking for and what types of support were missing in her first college experience, she realized the truth. A neurodiversity program was exactly what she needed to thrive.
Online Community for Neurodiverse Teens
In March, when Ellie was still living at home, I invited her to join an online social support group for autistic teens. It seemed like a good warm-up for a college program. While I couldn’t find a local group, I had identified an organization called AANE that offered a variety of support groups, broken down by age group. I told her that I had gone to one of the parent groups and found it helpful. Would she consider trying out this six-week group for teens ages 17-19?
She grumbled and shrugged, but she eventually agreed to give it a try. She showed up each week but barely talked about it with us. I couldn’t tell if she enjoyed it.
By April, Ellie casually mentioned that the group was moving to a different day and that she was considering signing up again. I tried to clamp down my excitement, kept a straight face, and told her calmly that I supported her decision.
Ellie stayed with the group for about five months, engaging with teens outside of the group on Discord and in one-on-one calls. It was the first time she had been part of a group of teens just like her. And even though their interactions were limited to screens, she felt understood in a new way.
In a parent meeting, Dr. J. said, “Someday the world will understand that neurodiverse communication is just a different form of communication. It’s not worse; it’s different and beautiful in its own way. But that’s why neurodiverse students need each other. When they connect with each other, there are no communication barriers.”
Early Wins
Even though Ellie has only been at college for five weeks, we already see little glimpses of the benefits of her neurodiversity program.
From Dr. J.’s initiative to schedule “sensory breaks” into Welcome Week, Ellie has learned new ways to take care of herself before getting overwhelmed. She can dialogue with other students about sensory overload and emotional dysregulation. Because Dr. J. made it a requirement, Ellie bought a robust planner and color-coded her homework to make it more visible. When two girls in her science class left her out of the group project, Ellie brought her hurt and confusion to Dr. J., rather than isolating. When Ellie bumped into another kid from the neurodiversity program at a religious group, she immediately relaxed. The two ended up playing games together for hours.
Yesterday, Ellie told me about her coffee date with the leader of a religious group. The leader told her that there are many other neurodiverse students in the group. I realized that Ellie must have disclosed her own neurodiversity to gain this information. The fact that she told this leader in their first one-on-one meeting made me realize that Ellie has become more open and therefore less ashamed of who she is. What she once hid, she has now accepted.
You Belong Here
I’ve thought about Dr. J.’s words many times in the past month since we moved our daughter into college. While some might interpret her words, “you’re not special,” as derogatory, I have come to cherish them. What they have meant to our family is this:
You belong here. All of you, with your invisible and visible disabilities, with your struggles with executive functioning and emotional regulation, with your love of knowledge and your special interests that you talk about endlessly. You belong here, with your history of not-belonging and friend disappointments and wounds from girl bullies. You belong here, whether you catch social cues, whether you understand small talk, whenever social anxiety handicaps you. You belong here, with others who have been misunderstood, and who have misunderstood and even hated themselves. You don’t have to mask anymore, at least not within our group.
We will support you to know, love and thrive as your unique, gifted, beautiful neurodiverse self.
I’d love to hear from you! What have you learned, as a parent, grandparent or teacher, to help kids thrive, especially in the ways that they might feel “different” from others? How have you helped kids (or yourself) find belonging when it doesn’t come easily? When has a special community provided just what you or your kid needed?
Grateful for your companionship on the journey,
P.S. Before you go, please tap the little ♡. It offers “social proof” and lets others know there’s something useful here. Thanks!
I don't have a neurodiverse child, but I have friends who I am sharing this article with. I think it will give them hope for what they know their children can achieve once they understand and thrive in their identity of who they are.
We are in the UK so I don’t fully understand everything you mention and I’m neurodivergent myself so that makes it a little harder but I get the essence of the post and feel encouraged as I identify so many similarities to my ADHD teenage daughter. Thank you for this post. I’m going to look for an online group for her through the organisation you mentioned