Different, Not Deficient
Writer Adrienne Frank reflects on her son Owen's visits to the Hussman Center.
Read the essayAll are welcome at the Hussman Center for Adults with Autism.
They start arriving two hours early, flocking from up to 50 miles awayâa testament to the magic of this place and the dearth of others like it. A few people want to be the first to play Mario Kart or Jenga after the doors open at 6 p.m., but most are just excited to be thereâafter all, itâs the first time theyâve seen each other in two months. Those without a $35 laminated membership card line up to buy a ticket before they sell out, and familiar faces greet new ones by asking politely but pointedly, âWho are you?â Some people carry bags of chips and pretzels or six-packs of soda (booze is prohibited, but thank goodness, Star Wars gear is not). Others clutch drawing supplies and chessboards that theyâll set up in a quiet corner.
Which isnât going to be easy to find on this late February evening. The steady stream of people who step off the elevator on the second floor of Towson Universityâs Institute for Well-Beingâthe place to be on Friday nights, judging by the gaggle of mostly young men packed into the waiting roomâare met with chatter and chuckles.
And a camaraderie that envelops them like a cozy weighted blanket.
âWeâre all just here to enjoy the atmosphere and the company,â says Chris Hicks, 37, a neatly trimmed mustache framing his 100-watt smile.
Like the 50 other people whoâve gathered at the Hussman Center for Adults with Autism, Hicks is on the autism spectrum. Diagnosed in 1995, the Pikesville man has been coming to the social group since it began meeting twice a month in 2012.
âThe hardest part of having autism is, sometimes itâs hard to meet people,â he says.
Itâs ironic that while more people are being diagnosed with autism than ever beforeâ7.8 million people, or 1% of the global populationâthey often feel completely alone.
One of the most commonly diagnosed developmental disorders in the United States, autism is characterized by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Even as the number of people diagnosed is increasingâ1 in 59 kids is now on the spectrum, up from 1 in 150 just 20 years ago, according to the Centers for Disease Control and Preventionâautistic people are four times more likely to experience loneliness than the general public. Of the 900 autistic young people surveyed in 2018 by the United Kingdom-based National Autistic Society, 79% said they felt socially isolated, the deleterious mental and physical effects of which are akin to smoking 15 cigarettes a day, researchers said.
During a 12-month period, almost 40% of young adults on the spectrum never got together with friends, according to another study published in the Journal of Autism and Developmental Disorders, and half of them never received a phone call or were invited out to socialize.
That the Hussman Center, which opened its doors in 2008, offers such a simple antidote for alienation and exclusionâproviding a safe, welcoming space for autistic people of all abilities and their neurotypical peers to engageâis nothing short of extraordinary.
âA lot of people donât understand autism; my dad didnât understand for a long time,â says Ryan Sammons, a soft-spoken 25-year-old who is partially deaf. âThey think because Iâm not really social and donât always understand them I donât want to interact.
âBut when Iâm here, Iâm not alone,â says the Baltimorean, âand that makes me feel happy.â
Everyone has a desire to belong, but connectedness and communityâlong defined through a narrow neurotypical lensâtake many forms. Sometimes itâs a touch, a smile, a silent game of tic-tac-toe, a conversation or just the comfort that proximity provides. Itâs being seen, which is just as powerful as being heard.
âWhen theyâre at the Hussman Center,â says Sharon Glennen, director of the Institute for Well-Being, âeveryone belongs.â
There are two ideologies when it comes to autism, both of which stem from a desire to improve the lives of people on the spectrumâbut in very different ways. Some see autism as a set of symptoms to be fixed, cured, erased from the gene pool. Others argue that neurological variations, like racial, ethnic and gender diversity, add to the richness of the human tapestry. They view perceived weaknesses as strengths in disguise and believe that the unique wiring in autism can inspire scientific discoveries, works of art and innovative solutions to some of our worldâs most pressing problems.
Neurodiversity, a term that emerged in the late 1980s but is only now beginning to
seep into discussions of diversity and inclusion, is at the heart of the Hussman Centerâs
mission: to build a more equitable, empathetic society that embraces people who think,
learn and communicate differently.
âWe are looking at autism through a social justice lens. We arenât denying the difficulties that people on the spectrum face, but we [contend] that many of those barriers stem from attitudes that we still need to change,â says Zosia Zaks, manager of programs and education at the center, whoâs also on the spectrum. âIt isnât about âfixingâ the person, itâs about changing the social architecture.â
At TU, that starts with students.
This term, 70 students representing myriad majors, from deaf studies to business to
anthropology, are enrolled in Zaksâ Individuals on the Autism Spectrum course. The
class fulfills the universityâs diversity requirement and is mandated for some programs,
like the disability studies minor. The most promising students are also recruited
for the College Autism Peer Support program, which pairs TU students on the spectrum
with
an undergraduate mentor.
Students must complete 20 hours of service learning. They help out at the centerâs
weekly classes for autistic adults, including art, cooking, fitness, robotics and
stress management, which have drawn nearly 1,200 participants since 2016. Students
are also required to attend at least two Friday night social groups.
Their chargeâlistening, learning, engaging, empoweringâstarts with becoming comfortable with people on the spectrum. Some, like freshman Corey Sparks, whose younger brother is autistic, jump right in, while others dip one toe at a time into what Glennen admits can be foreign waters. âThis is one of the first times where [as neurotypicals] theyâre in the minority. Usually, theyâre the ones we have to tell to mingle, not the participants,â she says, laughing.
During the first social group of the spring term on Feb. 21, about 15 students fanned out, ducking into the apartmentâcomplete with a kitchen and living roomâto watch Rango or playing Apples to Apples and icebreaker games in the classroom down the hall. All of them wore a smile, but for a few, it was a nervous one.
âStudents come into the class with biases,â Zaks says frankly. âSome think people with autism will be antisocial or unable to interact, or that theyâre going to need lots of help. Or they think theyâll feel sorry for them.
âPart of this [for students] is seeing that even if people donât connect or socialize in typical ways, theyâre still participating and enjoying themselves on their own terms,â Zaks continues. âThatâs where the real destigmatizing work begins for students. Itâs the first step to becoming an ally.â
Emily Friesnerâs first experience with people on the spectrum came in high school, when she worked with a nonverbal classmate. âI was hesitant at first,â says the occupational therapy major. âI wanted to help him navigate his challenges, butâI know this sounds funnyâI also wanted to make sure I was treating him like a person.â
Now a junior, Friesner took Zaksâ class during her freshman year and so enjoyed her time at the center that she volunteered before landing a part-time job there in 2018. Inspired by the people sheâs met at the Hussman Center, she hopes to work with children and young adults with intellectual disabilities after graduating from TUâs combined bachelorâs/masterâs OT program.
âYou canât fully understand [autism] until you hang out with people on the spectrum,â says Friesner as she works the snack table at the social group, doling out cookies and cupcakes. âI think Iâve learned more from them than theyâve learned from me.â
Thereâs a saying among those on the spectrum: âIf youâve met one person with autismâŠyouâve met one
person with autism.â Everyone has different strengths and difficulties. And if the
only autistic people youâre familiar with are pop culture charactersâthe card-counting
savant in Rain Man or the socially awkward scientist on Big Bang Theoryâyou have a one-dimensional view of an otherwise dynamic, diverse and complex community
wrestling with challenges both universal to all young people and unique to life on
the spectrum.
That the Hussman Centerâs philosophy is shedding light on the latter helps autistic people develop agency and defy societyâs assumptions about whatâs considered ânormal.â As Rosemary Davis of Bel Air, Maryland, says of her sons Eric, 28, and Nick, 25: âTheyâre accepted for who they are and donât have to worry about being seen as âoff.ââ On the spectrum, different is the norm.
Autistic people can be literal, obsessive, clever and wittyâoften in the span of a single conversation. Their knowledge of Star Trek, trains or physics can run a mile deep. Some donât make eye contact, others perseverate, repeating the same thing as if stuck in a loop. And up to one-quarter donât say anything at allâbut they still listen.
About 40% have average to above-average intelligence, though only one-third go to college. They experience anxiety, depression, unemployment and bullying at rates exponentially higher than their neurotypical peers. Some canât read emotion in othersâbut they still feel.
Some use their entire bodies to express their joy or displeasure, and many struggle with self-regulation, eliciting stares or snickers from passersby. A few are sensitive to light, noise or certain fabrics. They can get too close or abruptly walk awayâbut they still long to engage.
âThereâs more to us than meets the eye,â says Sammons. âWeâre capable of doing more than you think. You just have to get to know us.â
The Hussman Centerâs safe, supportive environmentâdevoid of judgment and self-consciousnessâmakes that easy to do.
On March 6, the center hosted one of its most popular theme nights: the spring talent show, which kicked off with renditions of Beatles and Beach Boys tunes. Paul McCartney and Brian Wilson they were not, but the performers were treated like rock ânâ roll royalty nonetheless, the standing-room-only crowd showering them with applause and heartfelt encouragement.
Up next was 18-year-old Molly Baer. A relative newbie, having joined the social group last fall, she was unusual in two ways: her gender (males are four times more likely to be diagnosed with autism than females, according to the CDC) and her talent. An accomplished trumpet player, Baer was agitated before her performance, snapping at her momâas teenage girls are prone to doâand fidgeting in her chair.
But when she put her lips to the mouthpiece and began playing âTrumpet Voluntary,â her anxiety washed away, replaced by the celebratory confidence of the piece. When she finished, the audience waited a beat, then erupted with applause as Baer, beaming, wrinkled her nose with satisfaction, pride and joy.
Molly Baer was among friends.
Adrienne Frank is a writer and editor who lives in Bethesda, Maryland.