Autism: Building Understanding and Helping Families Navigate
April is known as Autism Awareness Month. As the parent of an adult son with autism and a member of the board of Fraser, Minnesota’s oldest and most comprehensive provider of services for individuals with special needs, I took the opportunity to shine a light on a complicated condition and the challenges individuals, families, and providers face in helping them to live their best lives. I wrote the following op-ed pieces for the Pioneer Press in April 2017.
In the early years after my son’s autism diagnosis I prayed some person or organization would hoist autism from obscurity into public consciousness.
More than two decades later, WCCO-TV has helped answer that prayer with its Pulling Together community outreach event.
Blending fun and fundraising into what’s being hailed as an “epic event,” Pulling Together will generate funds and awareness for Fraser, Minnesota’s largest and most comprehensive provider of services for people with autism and their families.
At St. Paul’s Hidden Falls Regional Park teams will engage in a tug of war across the Mississippi River. Competitors will try to stay out of the water, just as families living with autism strive to stay afloat every day.
St. Paul will battle Minneapolis, with support from outside the metro. Pearson Candy Company will lead St. Paul teams, comprising competitors representing the St. Paul Police Department and Minnesota Wild, for example.
Central Roofing Company will lead Minneapolis teams with Minnesota Twins and Minneapolis Police Department representatives, among others.
While teams must raise at least $10,000 to compete, even those without buffed biceps can participate through online donations.
As a Fraser board member and parent of a Fraser client, I’m delighted, excited, and grateful.
Operating from six locations around the Twin Cities (and with a Woodbury location in the works) Fraser offers thousands of families a one-stop shop that didn’t exist when my family was looking for answers and strategies years ago.
Services run the gamut, from neuropsychology to applied behavioral analysis; speech, art, and music therapy; medication management; help with activities of daily living; counseling for trauma or anxiety; and more.
Whether clients participate in preschool, day programs, friendship groups, or career planning, the goal is to tease out strengths and develop effective strategies.
Early diagnosis and intervention are vital. But for the generation of parents who rode the wave from 1-in-10,000 to 1-in-68 with autism, the needs change, though the worry remains.
Parents of adults with autism aren’t scheduling speech therapy sessions. They’re wondering how their 6-foot child in diapers will transition from the public school system to a more unprotected world; how to shield their vulnerable daughter against pregnancy; and whether anyone will give their son who memorizes baseball trivia an interview, much less a job.
If we’re good planners we’re pondering who will care for our loved ones when we are gone. We’re grappling with how – and if — our guys can be taxpayers instead of lifelong recipients of taxpayer-supported services.
Each family defines success in its own way. I’m watching adult children become artists, employees, and volunteers. I’m seeing relationships form with peers or family members, debunking the notion that people with autism can’t make emotional connections, as I was told decades ago. I’m watching late-bloomers find their stride.
Fraser’s funding comes from a variety of sources: grants, private insurance, and as recently reported in the Pioneer Press, complex Medicaid programs. With ever-changing regulations, and uncertainty about health care, nothing can be taken for granted.
So Fraser turns to donors to sustain its mission of ensuring Minnesota families can access services within 35 minutes or 35 miles.
It’s an ambitious mission.
With each change of leadership at both the state and federal level, each change in legislation or regulation, CEO Diane Cross and her team must assess how they can best meet an array of needs for thousands of clients and, if needed, retool.
Businesses deal with uncertainty as a matter or course. People pivot daily to deal with the unexpected. We change jobs and partners. Life goes on.
But an autism diagnosis is complicated. Autism endures because, as my son reminds me, autism is not cancer. It’s who he is.
And so the challenge for parents is to find the best resources for our loved ones to leverage skills, confront barriers, and push for society to accept that regardless of social, economic or ethnic background -and developmental challenges — we all have hopes, dreams, gifts, and limitations.
As his only parent, I count on the Fraser safety net that stretches from the leadership team to the direct support professionals to support my son in the apartment where he lives among neighbors who may be oblivious that adults with autism are even there.
Parents like me use our resources, gumption, talents, and our remaining energy to make the world a bit better for both loved ones and strangers for whom many days feel like a tug of war.
I want to believe that awareness breeds acceptance and generosity; that awareness motivates a parent with a gnawing concern to schedule an evaluation; that awareness leads to charitable giving, which, in turn, enables Fraser to hire more staff to cut waiting times for diagnosis.
So during this month, when autism is in the spotlight, I’ll shine a light on four sides of this Rubik’s cube in a series of columns. Armed with information and insight, I hope readers will be a bit more compassionate toward the exhausted mom in the checkout line whose kid needs more than a good dose of discipline. And maybe even choose a St. Paul team to support on June 10.
To learn more about the event and how you can participate click here:
This piece first appeared in the St. Paul Pioneer Press on April 9, 2017.
Last December a video of an Irish girl with autism singing “Hallelujah” burned up social media. Years ago a high school student with autism went from team manager to high scorer during a basketball game and become world renowned. I love to tell those stories. We love to read those stories. They offer hope and make us feel good.
Yet, autism is a spectrum disorder. It’s complicated and sometimes very messy. To fully appreciate it we need stories about the children who do not sleep and the children who wander. For those are the stories that lead to the wrenching decisions families face when none of the strategies or therapies work. They illuminate decisions made when parents recognize they need to embrace Plan B.
Emmett Pattee had an unremarkable birth marked by normal Apgar scores. He reached his early developmental milestones. But, at 22 months old, his three-word phrases evaporated. He stopped sleeping through the night. He moved more, spoke less, and stopped responding to his name.
Randy Pattee and Val Ruttenberg are attorneys, fixers by nature. So Emmett’s diagnoses hit his parents hard: autism, pervasive developmental disorder, and childhood disintegrative disorder.
Physicians said Emmett would never talk or live alone. He would be severely retarded.
“You’ll keep Emmett at home until he ruins everyone’s lives, and then you’ll institutionalize him,” one doctor said.
His parents plowed through causation theories: vaccines, allergies, lack of affection, and excessive anxiety.
They chased cures as they struggled to hang onto hope and a thread of normalcy with their other sons, Jack, now 24, and Cy, 19.
Emmett never slept through the night and couldn’t be left alone. Randy and Val slept in shifts, one of them hitting the sack along with Emmett to bank some hours before the predictable rendezvous.
With his behaviors ranging from repetitive to life threatening, someone always had eyes on Emmett. He spent hours walking on the border of a rug. He slapped his palm against the window so forcefully he shattered the glass.
Family vacations were stressful. Holidays and parties were short lived. Jack stopped inviting friends over. Cy watched his younger brother when mom or dad needed a moment.
An unusual social group offered Randy and Val camaraderie and levity. “We called ourselves the Autism Social Society – because we thought the acronym was funny – and we could enjoy ourselves and just be ourselves with all members of our family,” Randy says.
The three other couples also have boys with autism. Theirs is a shared experience to which few can relate. Twenty years later the marriages and friendships endure.
“We had some wild parties – nudity, running off, broken furniture, bodily fluids – just like any good party. And we could all pitch in and help, laugh off or not even notice when one child toasted all the bread in the house or had to use every bathtub.”
Nevertheless, the stress grew.
A doctor was blunt with Val. “You know you can’t keep this up, right?”
She did. But Randy resisted. “Isn’t it the obligation of a family to be there for everyone, no matter the trouble?”
A decision hung in the balance.
Until “the episode.”
Emmett was 7 years old when he removed his soiled diaper and spread the contents around his bedroom. For 90 minutes, Randy and Val scrubbed walls and windows, the light fixture, door, toy box, and bookshelves. The mattress, bedding, rug and couch were ruined.
At an emotional tipping point, they put the wheels in motion to execute the dreaded Plan B.
Within the year Emmett was settled in a Fraser group home, 20 minutes away.
Fraser offers a continuum of services for people with autism and other special needs. In addition to supported and independent living apartments, Fraser operates 27 group homes in Hennepin and Anoka counties with round-the-clock staff support.
Within a couple of months a staff member succeeded in getting Bennett to sleep through the night. The hardest thing became the best thing for Emmett and his family as he found his stride with structure and outings with peers.
Fourteen years later Emmett remains comfortable and happy with familiar housemates and staff. He spends his days at Midwest Special Services, performing basic tasks commensurate with his skills.
Randy, the chairman of Fraser’s board of directors, credits the nonprofit with demonstrating there are many different forms of success and for helping his family to find their own.
Jack and Cy know they will be their brother’s guardians eventually. But for now they can focus on typical millennial life concerns.
‘”Emmett will never be able to live on his own,” Randy says. “He won’t be able to cook for himself. He’ll never get married. He won’t have a job. He won’t talk. We’re still holding out hope that one day he will be potty-trained, but that may no longer be reasonable, either.”
“His autism will never be cured, He will never be able to have what we would think of as a normal life.”
“But as long as Emmett has Fraser, he’ll have what he needs. He has a safe, clean, happy place to live. He has people who love him and take care of him. He is happy, as healthy as he can get, and is thriving in his own environment.”
“And that is why Fraser is important. Fraser is in this for the long haul – just as Emmett is.”
This piece appeared in the Pioneer Press on
At Fraser, Minnesota’s largest provider of services for individuals with autism and other special needs, people are essential to executing the mission. But here’s the rub: Staffing is a significant problem.
Presumably, employees become part of the Fraser team because they want to help people. But they also want to live their best lives, just as they want their clients to live theirs. And that’s a lofty goal with average wages for Minnesota home- and community-based service workers hovering just above $12 per hour.
As a parent who relies upon Fraser staff to ensure my son is safe, well cared for, and continually making forward progress, this is a grave concern. What will the future hold if people stop choosing to work as direct support professionals? What will his life – and mine – look like if there aren’t enough workers to do more than the basics — ensure he takes his medication, has food in his fridge, and keeps his bachelor pad in sanitary condition?
It’s a top-of-mind concern for Fraser CEO Diane Cross. “The greatest challenge is finding staff who are willing to provide daily cares such as toileting, bathing, medication administration, etc. for less than they can earn at a grocery store checkout,” she says. It doesn’t help that the Fraser human resources department is located next door to a grocery store that pays $14 per hour.
On the autism spectrum we find people like Temple Grandin who live alone, work, and travel. But people like Emmett Pattee, whom I recently wrote about, need round-the-clock care to ensure they are safe and content. And then there are youngsters who need to learn about reciprocal play and appropriate playground behavior – and so much more. It takes a person with special skills and temperament to work effectively with people with special needs.
So the worry shifts to supply and demand. Will there be enough people who want to work with clients Fraser has served for more than 70 years? Will the supports remain intact for both the little people Fraser diagnoses and treats and the aging population it serves?
Providers must follow complex regulations prescribing how they can pay staff. Families are prohibited from incentivizing the workers who connect with our loved ones. We can pay a bonus to our newspaper carrier but not to the person who provides critical services to ones we hold dear.
Parents live in dread and anticipation that a treasured worker will move up or move on – because he must. That’s a big deal when you have a little one who screams if mom deviates from the standard route to McDonald’s to purchase the chicken nuggets that are his only protein source. It’s a big deal for adults like my son who manage the unsettling uncertainty of life by asking, “How long will this (meeting), (meal), or (appointment) last? – and struggles to remain calm if it lasts longer than promised.
It’s tough, but not dire. Basic needs are met. It’s the extras that fall to the side — the vital quality-of-life experiences for people who tend to be socially isolated.
To fill the void, family and friends play a greater role in taking their loved ones out into the community and facilitating relationships. It’s awkward and surprisingly difficult to arrange play dates for your millennial. Moreover, not all families can continue with a responsibility most expected would end a couple of decades after we give birth.
Every year the Best Life Alliance asks our Legislature to increase the wage for direct-care professionals. As our elected officials grapple with funding for employees at Fraser and its counterparts around the state, this parent and Fraser board member hopes someone in that body – or in the governor’s office – has personal experience with this issue.
I pray an influential policymaker understands how excruciating change can be for people with special needs, how if serving a new food can trigger an uncontrollable outburst, changing staff can cause a tsunami. And that ongoing staff/client relationships are integral to a successful program.
I pray someone will think about how months of skill development and confidence building can unravel when an employee who earns less than a grocery store cashier decides she’s had enough of working with clients who can’t have a meaningful conversation.
I pray someone will take the long view on behalf of an increasing number of people who are coping with extraordinary and enduring needs and help fashion a solution for making this the smoothest possible journey for our most vulnerable children and adults. I pray someone with a platform will say, “These people matter. Let’s do the right thing.”