Griffin Stanley has deep, piercing eyes to match dark-chocolate hair. His 5-10 frame, fair and dotted with the lightest of amber, is dressed in Life is Good T-shirts more often than not. He has an infectious wide-cracked smile that turns cheesy in front of a camera, and a warm honeyed laugh that spreads thickly from his belly to your heart.
He loves to go horseback riding on a muggy Saturday morning, bodysurf at the beach he grew up on, hike the North Carolina Smokys when he can get away. He knows exactly where to put that puzzle piece that has eluded you for hours, and will drive you nuts when he plugs it nonchalantly into place. He’s got some serious speed but never has cared much for sports. It’d be chicken every meal of the day if he had his way, but he’d much rather go to a restaurant or supervise from a safe distance than do the cooking himself. And while he may have a wicked-rotten sweet tooth, he has not a mean bone in his body.
Griffin, 26, also has autism.
Sometimes those handsome eyes will search mine in vain, no doubt wishing desperately I could read his mind. Some days his pervasive OCD grips a bit tighter than others, his favorite trot at the barn strictly a routine to be completed. If the Gulf is too calm, he won’t get in. If that restaurant is too loud, too crowded, too new, he might refuse to eat until he gets home. He has been known to demand his water before the waitress addresses him but not drink it until he stands to leave, or to hold onto his plate when she tries to clear it away. We’ve seen that impressive speed not only on the track but past unsuspecting shoppers in the grocery—a full-on, flip-flopped sprint in the name of Pillsbury ready-to-bake cookies, never mind the three open packs at home.
As the saying goes, if you’ve met one person with autism, you’ve met one person with autism. It’s called “autism spectrum disorder” for a reason. But I hope one chapter of my brother’s story will open your eyes, heart and mind to autism and the challenges faced by adults like him and families like mine.
Welcome to Holland
Griffin’s elementary school bus rolled to a squeaky stop in front of our house. Ahead of schedule, the brimming bus of our older brother, Ben, came clamoring up behind.
The two met in the driveway to familiar sounds, doors smacking back into place and gravel crunching underfoot. But today, something different. A boy stuck his head out a grubby window as the bigger bus pulled away.
“Hey, Ben!” he yelled. “What’s wrong with your brother?”
Ben flipped him the bird and walked with his brother inside.
I can’t pinpoint a moment when I understood what autism was, or that Griffin had autism and I did not. He has always been my brother. Autism has always been a part of my life. To Ben and me, there has never been anything “wrong” with Griffin.
You might know me for months without knowing I have a brother with autism. It’s not because I’m embarrassed, which I have been. It’s not because I’m being overprotective, which I can be. It’s because, nine times out of 10, to me it should be irrelevant.
I’m not going to say, “Hi, I’m Cayla. I have a brother with autism.” Or, “I’m going to hang out with my brother, who has autism, this weekend.” It’s not that I never talk about him. I just say, “I’m going to hang out with my brother this weekend.” “My brother ate all my Halloween candy.” “My brother tried to put my goldfish down the garbage disposal.”
(By the way, my family and I believe in what’s called person-first language. You won’t hear us call Griff “autistic”; he has autism—just like he has a gentle nature and a bottomless stomach. It is a part of him, but it does not define him. And he certainly is not “an autistic,” or a victim who “suffers from” autism. He is a human being.)
I see Griff as the glue that holds our family together. It’s because of his never-ending needs and unconditional love that our parents, Bart and Julie Stanley, are so nurturing and strong. It’s because he lights up when Ben calls and visits from his home in Savannah, Georgia, that Ben is as humble and kind. It’s because he has borne so many assumptions that I try so hard not to make them about everyone else. He makes us the unbreakable, close-knit envy of my friends. He makes us who we are.
He has afforded us compassion and patience. Kept in check our judgment, ignorance and intolerance. Inspired us by having navigated his world despite the frustrations he encounters every single day. Without him we would crack fewer smiles, like when he sweeps random leaves from the street in a perfect back-heel pass to the grass as we walk the dog. We would free fewer laughs, like when we ask for a pretzel and he combs the bag for the tiniest broken piece he can find—and presents it with a chuckle. Surely there would be no moments quite like when he hooks you in for an absentminded hug or reaches for your hand.
Yes, I used to wish he would hurry his two steps forward, one step back through the throngs of our high school peers, not leave them a gawking river to pass around two stagnant stones. I wish he could clearly communicate his symptoms when he is feeling sick. I wish we knew he’d be OK if we finally ventured to take him on an airplane, wish typical restaurant din for us wasn’t overstimulation for him, wish it didn’t comfort him to flip the lights on and off or sit alone in the dark plugging his ears, wish he wouldn’t intentionally set the table one fork short, wish he would play a CD other than Ladysmith Black Mambazo. I wish life were simpler.
But staying home with Griff so my parents can enjoy a well-deserved date never feels like an obligation. Helping him put on a movie, prompting him to say thank-you or reminding him he can scoop his own damn ice cream is second-nature, not annoyance. I appreciate that he wants to straighten the salt and pepper shakers and cut the stray threads from his pockets. Ben was happy to lend his art talents to Griff ’s summer camps and volunteer at fundraisers. I don’t mind re-writing the grocery list on the correct notepad so he can sleep at night. I sure didn’t mind hanging with him after high school until my parents got home instead of getting a job. There’s a lot of teasing, teaching, repeating of questions and commands. There’s a lot of forcing past his walls. But once you do, you’re glad you did.
My dad keeps a beautiful perspective with a famous poem by Emily Perl Kingsley. Raising a child with special needs is like adjusting to a reroute of your dream vacation, it says.
All your life, you have your heart set on going to Italy. You buy the guidebooks, map out sights to see, even learn a few phrases of the language. Excitement building, you board the plane and weather the trip. But when you land, you’re not in Italy. You’re in Holland. And you have to stay. It’s a different pace, a different language, different sights and sounds. “But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.” The dream of Italy will always be a significant loss. But if you spend all your life mourning, you will never be free to enjoy all that Holland can be.
Tooth and Nail
When Griffin was diagnosed, there were zero autism services in Collier County. Verdant Naples hid a barren wasteland my parents had never seen.
His primary care doctor had said there was nothing to worry about at his 2-year appointment. But they couldn’t ignore the stunting of speech, the social withdrawal, the sleep disruption, the disinterest in things Ben was interested in, the similarities to a character on St. Elsewhere, of all places. In three months they traveled to nine more doctors—one of whom called to say it was likely a brain tumor and everyone should “say their prayers”—ending with a final diagnosis at the University of Miami.
My mom started going to national conferences with my grandma, and joined a group called Parent to Parent. It consisted of only four other parents, to children with Down syndrome and vision impairment. Autism was so new. My parents’ only exposure was Rain Man. Doctors didn’t have the information, and educators didn’t have the training. Griffin would miss out on
the crucial early intervention pushed so hard for today, losing almost all his speech until he was 6 and a half.
His pre-K class enveloped a variety of disabilities, as did his kindergarten class, which carelessly labeled him and his peers as “TMH”: trainable mentally handicapped.
“He is the most severe child I have ever seen,” the school district psychologist said. Just like that, a 50-something stranger had in one sentence swept right past tact and empathy to devastatingly deflate all wind from the sails.
Griffin was the first student the Collier County School System officially labeled as having autism. When he was 7, he was in the county’s first autism-specific elementary school classroom. He then joined the county’s first middle school classroom, and later its first high school program. My parents have battled uphill since day one to get him the services he needs. Before the appropriate classrooms were formed, they drove an hour to Fort Myers twice a week to pay out of pocket for speech and behavioral therapy. (Florida law would now entitle Griffin to such services until he was 22; it passed just after his 22nd birthday.)
Then came the fights for intensity of programming, for funding, for comprehensive IEPs (individualized education plans), for vocational labs, for data from the speech therapist, for a one-on-one aid, for inclusion with regular-education students.
“Why would that mother want to teach him to cook?” the Golden Apple-winning home ec teacher said.
The community has come a long way since then. Treatment is more attainable and more rigorous. There is more than one classroom to choose from. There is more summer programming. But now, parents like mine face another trail to blaze first: adulthood.
Life over the Cliff
Monday and Wednesday: Carrabba’s 9-11 a.m.; Mindy 11 a.m. to 1 p.m.; work with mom or dad 1 p.m. on.
Tuesday: life-skills class 10 a.m. to 3 p.m., or adult day training (ADT) 9-3 p.m.; work or home with mom or dad 3 p.m. on, or Janellen 3-7 p.m.
Thursday: ADT 9-3 p.m.; work or home with mom or dad 3 p.m. on, or Janellen 3-7 p.m.
Friday: ADT 9-3 p.m.; work or home with mom or dad 3 p.m. on.
Griff’s schedule is hectic even for someone not dependent on routine. It almost needs a key: Carrabba’s is where he works sorting and rolling silverware, a task both rewarding to the perfectionist and tempting to the food-lover in him. The life-skills class is close to home and rotates important topics, but runs only once a week for four six-week sessions a year. Mindy=Godsend. She is Griffin’s job coach and companion caregiver. She provides respite by taking Griffin into the community, on errands and into her home, as does Janellen, an equally kind, qualified and championing companion. ADT is the only autism-specific adult day program in our area.
My mom almost never gets to work before 9:15 a.m. She or my dad has to scramble to interrupt their workday or end it early three days a week. Hours of the evening and weekend are spent taking Griff horseback riding, sailing, painting, dancing and more. Given his limited interests, it can be tough to coax him outside the house beyond his coveted trip to Publix with Dad and weekly visit with our grandparents.
This constant shuffle is the norm for families who seek the quality of life their children are entitled to. Who want to give them the safety, development, participation in society and fulfillment they deserve. And my parents count themselves lucky: They’ve always had the support of their families. They have precious flexibility as owners in their family business. They receive supplemental Med Waiver funding, something many families we know do not have and have little hope of receiving. (My parents waited almost a decade to obtain it—after the Department of Children and Families said Griffin would not need their services again until he was an adult, he was removed from the system at age 3—and they would have to start over on an equivalent waiting list if they wanted to move to another state.) We know of other adults in limbo who sit home all day, and of parents who have had to quit their jobs.
So why doesn’t Griffin attend ADT every day? Other than a few on-campus chores, he isn’t busy, enriched or challenged. There is no opportunity for community contribution. Most of the clients have aggressive behaviors that demand attention Griffin is not getting. And, in a traditionally underpaid field, the staff is unstable at best.
Why doesn’t he have a private companion 24-7? Well, Janellen works for the school system and is thus unavailable until after 2 p.m. nine months out of the year. Mindy has other commitments. Anyone else has proven hard to find. And, ah, yes: money. A full-time companion would break the bank. As it is, it’s incredibly difficult to find someone who is available part-time; has the training, personality and experience to be a good fit; and can accept the pay we have to offer through Med Waiver. We have seen many people come and go. A growing number of individuals with autism are aging out of the school system and entitlement laws, or “falling off the cliff.” According to international advocacy organization Autism Speaks, 500,000 children with autism will become adults over the next 10 years.
So what do their families want, you might ask. What do they need? A spectrum of behaviors, idiosyncrasies, goals and abilities requires a spectrum of support. There is no one answer. My parents dream of an accessible establishment in Collier County where Griffin would receive a custom-tailored combination of vocational, recreational and social components that build upon his strengths and improve his weaknesses. A “hub” of sorts that individuals and their well-paid, numerous supports can leave from to work in the community and come back to for therapies and engagement.
Other areas have kick-started workplaces that surge beyond accommodation of workers with special needs to a specific focus on and devotion to their employment. Where is that here? Our vocational opportunities are alarmingly slim.
We could focus on how many individuals with autism have above-average intelligence, how many are nonverbal, how many have severe behaviors. But I see it like this: Each person has a gift to give, and that includes the thousands of adults on the autism spectrum we are missing out on simply because we haven’t let them give it.
Griffin’s fine motor skills are poor and his speech is limited. He also can be lazy and need a push. But he does not belong parked in front of a TV or sequestered in a building. He is healthy, strong and well-behaved. He has a good memory, great balance and a great sense of direction. He understands a million times more than people give him credit for. His splinter skills, namely meticulousness and precision, could be a real addition to the workplace.
In his high school program, he excelled cleaning hospital conference rooms, stocking the school cafeteria, delivering mail around the school campus and tidying a local library. He started at Carrabba’s—thanks to a manager who took the chance—was officially hired after graduating and has now held the job for four years. He volunteered at a prominent community center until his companion left to begin a full-time job, started volunteering at another library this summer and could add countless things to the list.
He just needs a little help to do it.
Myths, Debunked
“He gets the teriyaki chicken,” piped a voice behind the glass.
My mom was with Griff at Panda Express, in the mall where Mindy of- ten takes him. She asked him what he’d like to eat, and before he could answer, the woman working answered for him.
As could the ladies at all his favorite food purveyors: the Publix bakery, multiple Publix delis, Haagen-Dazs, Starbucks. (Two glazed doughnuts, fried chicken, a cup of chocolate chip and a slice of lemon pound cake, respectively). He makes fans nearly everywhere he goes.
But for every one admirer, there are 10 people I wish understood that to know Griff is to love him. That everyone he meets is better for it, from cashiers to my cousins to strangers on the street. Wish as I may, not everyone gets it.
A co-worker at my previous workplace threw jokes about the Special Olympics around like it was going out of style (newsflash: It did). An acquaintance told my mom what great parents she and my dad were—because they didn’t put Griffin in an institution.
Ben’s teacher, upon seeing my mom and a young Griffin who didn’t greet her in the grocery store, said to her, “I didn’t realize he was so severe!” An old friend literally told her following Griffin’s diagnosis, in some warped intention of support: “When life gives you lemons…”
Griffin is not a lemon. He is awesome. Some more truths about autism I wish I could shout from the rooftops:
Lack of speech does not equal lack of intelligence.
Disability does not equal inability.
Autism does not go away during the summer, or when someone turns 22.
Autism is a neurological disorder, not a physical illness. Some of us cringe when you call it a disease.
Having autism does not mean someone is retarded. (P.S. Neither is your spotty phone service, a bad joke or the way your hair is falling. You have a broader vocabulary than that, I hope.)
People with autism are lifelong learners. It may take them longer, but they are more than capable of progress.
People with autism have ears, eyes, comprehension and feelings. Don’t talk about them or gesture as if they’re not there.
People with autism are people.
What’s Next?
I can still hear the buzzer like it was yesterday: Grating, quaking, relentless.
I could not peel Griffin off that buzzer.
We were at the back door of Carrabba’s, ringing the kitchen staff to let us in. Griffin had to do it himself, and he had to do it repeatedly. For lengths at a time. The ever-sweet, accommodating workers were dealt a blast like a deafening Morse code.
Once we made it inside, Griffin took literally minutes to cross from the vinyl to the tile, and again from the tile to the carpet. He got through barely a dozen rolls. He would not get out of his chair. He wouldn’t let me put the bin away, or take his bag to the car. He was angry, and I was angry. Couldn’t he help it? Was he goading me, taking his hat on and off? He knows he has to wash his hands each time. And didn’t I, his sister, have the magic words to break through?
I hated those months as his job coach, before we got a handle on his OCD. All I wanted was to be his sister.
It’s off-days like that when I am most uneasy at the thought of Griffin’s future as my own. I am more aware that while he went to work that morning just like I did, it wasn’t quite the same. My mom laid out his clothes and medication; she made his breakfast; she prompted him to brush his teeth, tie his shoes, get out the door; she drove him and my dad would drive him home. It weighs more heavily that, as much as you want to do those things, it’s hard.
Other days, reality tugs only softly. When I hear he had a great day at work, that he was not only cooperative but speedy, vocal, taking initiative— those facts seem so small. It’s much easier to pretend things will go on as they are forever, and that my parents will always be around.
But Griffin’s needs are eternal. He wasn’t free to fly when he turned 18; my parents became his legal guardians when he was 25. As custodians of his happiness, wardens of his well-being, they must take every step to ensure he is always taken care of. And one day that torch will pass to Ben and me.
My parents want Griffin to live with them as long as possible, but it is very real that one day he will be here and they will not. Ben and I will be caring for Griffin when and beyond when we are caring for our parents, as will hundreds of thousands of people in our shoes. And when that day comes, I want him to live with me.
My parents have never asked that of Ben and me, and maybe something will change my mind. But today, I feel it like a compass pointing north. Today, I prepare myself for extra consideration in where and how I live. I can’t bear to think of not seeing Griffin every day. It breaks my heart to think of turning him over to someone else to see to his needs. Would he like it? Would he understand? Would he be loved and feel loved? I’m horrified at the idea of mistreatment, neglect and lack of affection. The thought of him feeling abandoned is enough to make me sick.
But will that be what’s best for him? Will I be able to care for him how he needs and deserves? Would I do as good a job as my parents did? Would he be happier in a group home? Or in an apartment with rotating live-in caregivers, who would be able to take turns being on the clock? Will the answer lie in a cohousing development? Would I be able to find my own work and happiness in the places that offer those alternatives? Will I feel the same if I have children of my own? Would those children have a greater chance of having autism? Would they be receptive to gaining the same positives from their uncle that I did from my brother? Will my husband-to-be’s support remain as rock-solid as it is today? What will we be able to afford? What if Ben and I are not even here?
My family is not the only one asking these questions. Millions—and growing—are thinking or will have to think about how to care best for their loved ones with autism, and who will care best for them when they cannot.
We’ll continue to figure it out as we go.
20 THINGS YOU EXPERIENCE AS A ‘NEUROTYPICAL’ SIBLING
Here’s what my Buzzfeed list would say:
1. You are positive your parents are the best parents. Superheroes, even.
2. There’s a good chance you know the words to nearly every Disney song.
3. You knew “OT” to mean “occupational therapy” way before “over-time.”
4. You learned to go with the flow when your sibling couldn’t.
5. You learned to accept help.
6. You know better than anyone that behavior is communication. (When Griffin was little, he would bring female guests their purses when he felt it was time for them to go home.)
7. You regularly encounter assumptions, generalizations and outright ignorance.
8. You are quick to defend your sibling (Ben probably should have talked to his middle school classmate about calling Griffin the “r word” instead of hitting him in the face). And the moments you didn’t go to bat for him or her are burned in your mind long after they’re over.
9. You play the roles of advocate, entertainer, guide, protector, comfort, mouthpiece and teacher, but they are always surpassed by sibling and friend. And you need your sibling as much as he or she needs you.
10. Your sibling’s sounds of joy, self-regulation and frustration are normal to you but definitely not normal to others.
11. You are often exasperated, frustrated and irritated (like when my mom missed me walk at my high school graduation because Griffin wouldn’t stay in his seat).
12. You are often amused (like when Griffin put on our mom’s hot-pink one-piece bathing suit because he couldn’t find his own).
13. You find yourself harmlessly wondering if some of the more eccentric people you meet are “on the spectrum.”
14. You have moments of OMG embarrassment (see: a young Griffin stripping naked at my friend’s house and jumping in the pool—more than once), moments of terror (see: Griffin disappearing in the grocery store) and many more of tremendous pride (see: Griffin disappearing in the grocery store because he was spontaneously motivated to go independently through the checkout line for the first time and pay for a box of Entenmann’s doughnuts).
15. You accept that even family and close friends don’t always understand your priorities.
16. You have been baffled by ignorance and cruelty. You see the offend- ers, not your sibling, as the ones with the issue.
17. You have been baffled by kindness and understanding.
18. It’s not uncommon to be stressed, depressed, uplifted and optimistic all in the same day.
19. Through the special needs community, you have met the most wonderful people in the world.
20. Your sibling makes you better just by being him or herself.
FRIENDS WE’VE FOUND
*ABLE Academy
*City of Naples Special Needs Camp
*Collier County Parks and Recreation Adaptive Sailing Program
*Creating a Future for Adults with Autism
*Easter Seals Florida
*Foundation for the Developmentally Disabled
*Kneads: A Fresh Vision for Special Education n
* Naples Equestrian Challenge
*Special Needs Children’s Fund
*Trust for the Advancement of Responsible Artists (TARA)
WHAT IS AUTISM?
-Autism spectrum disorder (ASD) is a complex group of lifelong developmental disabilities characterized in varying degrees by social, communication and behavioral challenges. The cognitive abilities of individuals with ASD can range from gifted to severely challenged. Each individual on the spectrum is unique.
-An estimated 1 in 68 children are diagnosed with ASD—more than double the rate of less than 10 years ago. ASD crosses all racial, ethnic and socioeconomic groups, and it is almost five times more common among males than among females.
-Just as there is no one type of autism, there is no one cause. There may be many different factors that make a child more likely to have ASD, including environmental, biologic and genetic factors.
-There currently is no cure for ASD, but treatment—each plan of which is unique—includes behavior and communication approaches; dietary approaches; complementary and alternative medicine; and medication to aid symptoms such as high energy levels, inability to focus, obsessive compulsive disorder, depression or seizures. Early intervention services can greatly improve development.
-It costs at least $17,000 more per year to care for a child with ASD than for a child without ASD, with expenses including health care, education, related therapy, family-coordinated services and caregiver time. The lifetime cost of caring for one person with ASD ranges from $1.4 million to $2.3 million.
-ASD is the fastest-growing developmental disability but the most under-funded.
—Autism Speaks, Centers for Disease Control and Prevention, National Autism Association
