Advocating for adults with autism as the system struggles to catch up
She lay there crying, arms wrapped around her “5-year-old” in the psychiatric hospital as he slept. Four words were her new existence. Nobody will help us. What was to become of her son, the precious soul who was unaware of his situation? According to his date of birth, Jackson is 21, but autism has frozen him in time, his mentality and emotional state like that of a 5-year-old. To his mom, Denise Talbert, that's exactly what he is — a precious 5-year-old the system has let down. “Nobody tells you,” she says. “Nobody tells you what might happen.”
For years, Jackson was OK; the challenges that came with having an autistic child were always there, but they were manageable. Diagnosed at 4 years old, Talbert describes him as low-functioning in some respects and high in others, very verbal in a “word salad” sort of way. They moved to Lawson, Missouri, for its strong school system and weren't disappointed. Regular notes and emails from teachers evidence their personal connection with Jackson and his family. “We had a wonderful educational experience,” Talbert recalls fondly. “Lawson has an amazing special education program.” The program director even arranged for an internship at Ideal Industries, a job program that serves people with developmental challenges in Richmond, Missouri, between his junior and senior year, where he continued working after graduation. Things for Jackson were looking positive after high school, and his family moved to Kansas City so he would have even more opportunities.
Without warning, things changed. At 20 years old, he began having psychotic episodes that escalated in severity. Nobody told Talbert or her husband that could happen, that their son who watched Barney videos and loved to memorize people's names could change so drastically. “It was the worst year of my life,” Talbert says, her hands shaking, eyes filling with tears at a memory that is still so raw.
Nobody told her that police may have to be called, or her son — a 5-year-old in so many ways — would have to stay at Research Psychiatric Center while they tried to navigate the labyrinth of Medicaid coverage and emergency residential services. Nobody warned her that she may have to grieve the loss of a son she knew as she was thrown into a black hole of paperwork and unhelpful phone calls.
“There's nothing set up to help parents of adults with autism,” Talbert says. Although the Missouri Department of Mental Health has procedures in place, there's no one to help parents navigate — or even understand — them. “Individuals helped us out of the goodness of their heart, but there's nothing set forth in a formalized fashion,” she says. An attorney herself, Talbert was still not prepared to tackle the complex world of Medicaid alone. It took eight calls to attorneys before she and her husband found one who was willing to help.
“Understand that, until you go through the labyrinth of the Department of Mental Health for Medicaid or Medicaid waivers, nobody will talk to you,” Talbert says. “You're in a vortex.”
It's not easy to find doctors for adults with autism. Or dentists. Or eye doctors. Teeth cleaning may require sedation. Medication regimes can be complicated and ever-changing, such as the strong antipsychotic medications Jackson is prescribed for his autism and ADHD, plus his bipolar disorder that nobody recognized until last summer. Adults with autism need doctors who understand their needs, yet they are hard to find.
Talbert listens politely to stories about autistic children who graduate from college and struggle to find a job. She listens and sympathizes, appreciating how different autism experiences can be. “People focus on social situations, which is great, but attending classes at Johnson County Community College isn't an option for Jackson,” she says. At one point, they were told they had three options for their son if they wouldn't take him back home: the street, Truman Medical Center or jail. So, like any parent would, they took him back home until his behavior escalated and jeopardized the safety of their family.
“There needs to be funding,” Talbert says. Despite their low pay, the loving and dedicated care providers along the way were the ones who really made a difference in Jackson's journey, Talbert says. “Think about how you shepherd your child's needs as they mature, then multiply that 10 times after they leave the school system.”
With the help of a case worker at the psychiatric hospital, among others, Jackson was eventually placed in a residential facility in Grandview. He has a job with Southeast Enterprises (a sheltered workshop), facility-run transportation, loves Powerade and Pizza Hut, watches Barney videos and continues to ask people about their names for his mental library. For now, Talbert is cautiously relieved, understanding that she must always expect the unexpected. Discouraged by the lack of resources available, she feels they've made it to the other side of the storm with hard work, tenacity and a lot of luck. “It's not the system that helped at all,” she says. “We had people who cared.”
The phrase “aging out of the system” can seem dramatic, like it's the edge of a cliff with nowhere to go but down. For parents of children with autism, both excitement and concerns grow as their children move closer to leaving the school system in which they spent so many years learning, navigating and trusting to help their children excel. With all we know about autism — and all we don't — finding a way for their children to lead full and productive lives lands squarely on parents' shoulders. As their children prepare to end one life chapter and start the next, why they have autism doesn't matter as much as what how they're going to build the life they deserve with as much independence as possible.
Mary Anne Hammond and Robin Jordan at Children's Mercy live the complexities of autism. Hammond, community education coordinator for autism and related disorders; and Jordan, family resource specialist; bring something to their jobs that formal education can never teach: personal experience. With adult autistic children of their own, they see the gaps in resources and have every hope that time will eventually fill them.
“Experiences are individualized,” Jordan says. “But there are gaps in availability of services for adults.” Although her son, Boone, lives independently and has a job, the logistics of his day-to-day routine was a huge concern for Jordan and her husband. “Transportation is a real issue,” she says. It's not practical for parents to drive their adult children everywhere, especially to a daily job, but public transportation or other options are lacking. “The decision to let him get a driver's license was one of the most difficult we've had to make.”
Hammond’s daughter, Kailey, is a beautiful and spunky 22-year-old. To others, she may look like a typical 20-something, but she functions at a 12- to 18-month-old level. She won't be able to live independently, but that doesn't mean that her days are unproductive. Hammond and her husband researched options and decided on a day program at Lakemary Center, aware that decisions regarding long-term residential facilities are not far behind.
Autism is nothing if not complex. It can be frustrating, isolating and heartbreaking. Those things describe the condition, however, not the people. People with autism are loving, gentle and kind. They have beautiful souls and minds that see the world in a wonderful and unique way. There are as many unique stories as there are people and no such thing as a typical person with autism or typical needs. “There are no generalizations you can make,” Hammond explains. “They're all different.”
Because children with autism thrive with routine and predictability, aging out of the school system can be among the most stressful times for families. “Times of transition are so difficult for them,” Hammond says, which is why they suggest starting on a transition plan when a child is 14 years old. Both women echo Talbert's advice and share in her frustrations. “Improving scope of services is a work-in-progress,” Jordan says. “The community is beginning to evolve to recognize the needs for assistance across lifespans.”
Because Applied Behavioral Analysis therapy usually stops by 8 years old, treatment of children and young adults with autism will look differently as they age. “As an adult, it's a lot more about cognitive behavior therapy and medication management,” Jordan explains. Children's Mercy works with community providers to facilitate transition of care when patients turn 18, including offering a free service (1-800-GO-MERCY) that allows providers to consult with Children's Mercy physicians about treatment options for special needs patients. They also collaborate with the UMKC School of Medicine on a developmental pediatric residency program to help prepare physicians to treat adults with developmental disabilities.
Like Talbert, both Hammond and Jordan emphasize the need to be proactive. “After 18, you're the complete project manager,” Hammond says, emphasizing that it's on the parents to make decisions and carve out the path that's right for your child. “It's hard to have a child with autism because you have to adjust your expectations about what their life will be like. The grieving never stops,” Jordan says. “You have to be tenacious and realize that things are going to change, but it wasn't until I gave up the illusion that I had control that I realized things are going to be OK.”
Rather than focus on what their autistic children can’t do, these parents spend their time researching, exploring and supporting how best to support and maximize a life that draws on their children’s individualized strengths.
“It's a long journey,” Jordan says. “But one worth taking.”
And, where there are gaps in the community, both Hammond and Jordan have done their best to address them. Jordan started AWARE, a social events program for special needs adults with activities that range from art classes at the Nelson-Atkins Museum of Art to trips to the Renaissance Fair and game nights. Starting out with just eight families on her email list, she now sends program information out to more than 100. “I asked myself, ‘How can I ask someone else to provide capacity opportunities if I'm not willing to try?’”
Hammond and her husband helped to start the Foundation of Inclusive Education (FIRE Foundation) 20 years ago, even before Kailey was in school. Determined to provide her an inclusive education in their Catholic school, their mission is to make sure that all special needs students have a similar opportunity. “These wonderful people also need to be included,” Hammond says of the foundation's message.
A lack of resources, financial and otherwise, is still among the most significant of concerns as children with autism age out of the school system. Families are regularly faced with the difficulty of holding down a job while balancing the needs of a loved one who is now home and requires full-time supervision and care. “It's just the type of problems that people face and endangers our ability to provide financially for our families,” Jordan explains.
With so many gaps to fill, Hammond and Jordan focus on what they can do now and how best to prepare families who are receiving an autism diagnosis and feel completely overwhelmed. When Jordan's son was diagnosed, 1 out of 1,000 children were diagnosed. That number is now 1 out of 68. From the Project RISE program at Children's Mercy that employs special needs adults to Hammond and Jordan’s efforts in the community, the need to stand up and fill a need is still strong among those who live with the reality of what autism looks like for adults. To do nothing is simply not an option. “We're trying to be part of the solution,” Hammond says.
Park Hill School District, like most in the area, offers a special needs program for students ages 18 to 21. These programs provide a valuable service for children who may not be ready or able to attend college or find a job. Harrison Long is one of many enrolled in Park Hill South High School's special needs program after his parents decided a few years ago that he was best served by following a specialized track that focused on both education and life skills. Now 15 years old, they at least know what Harrison's next six years will look like, even if his plans after school are still unknown.
Harrison is tall with dark hair, his looks and round glasses a little reminiscent of Harry Potter. He dances and sings along to his favorite tunes, a spontaneous breakdance move not uncommon to a beat that is more suitable to a slow sway. He is happy, content and loved, the promise of a car ride by his parents, Berry and Shana, enough to send him into fits of giggles and anxious anticipation. For Harrison, the program is a good fit, challenging him while providing real-life skills. “He can do math but has a hard time understanding the reality of it,” Shana says, explaining that the excitement of a store purchase may cause him to give the cashier a $20 bill and just leave. It's this day-to-day disconnect between what he knows and how it's applied that's the biggest challenge for Harrison, and many like him.
Berry and Shana understand that Harrison's future will look different than some of his peers, but that doesn't mean his life won't be fulfilled. Although their goals for him are realistic, they want him to be engaged and challenged like any other child. For now, their days are focused on YMCA Challenger events, finding a dentist, applauding his dance moves and navigating the myriad of side effects that come with medication changes. Their marriage stronger than ever as they work as a team to care for their special needs child, and they recognize that they're lucky in so many ways. Yes, the future may be uncertain, but they try to approach their lives with a sense of humor and healthy dose of perspective. Harrison will leave their home someday, and they know, like any other parent with an empty nest, that day will not be easy. For now, their hopes for his future are simple. “We hope that he has a good quality of life and people treat him well,” Berry says. “We hope he's happy.”
Advice From Those Who Have Gone Before You
- If possible, hire a lawyer who specializes in Medicaid and SSI to help navigate the healthcare system.
- Understand how private healthcare coverage will change when your child turns 18.
- Be aware that behavioral changes – similar to those during puberty – can occur again in your child's twenties.
- Consider seeking a professional's help with the transition toward independence, especially if there is a potential for dating or sexual relationships.
- As the parent, you will have to explore all housing opportunities, research alternatives, and fight for the best option.
- When your child turns 18, create a special needs trust and establish limited or full guardianship to retain decision-making authority and protect your child's interests.
- There is now a simple saliva swab test that determines how medication is metabolized. Get this test – it can help to avoid unnecessary trial runs of medication and dosage.
- Research, research, research. Read everything you can, get informed, join groups and stay apprised of what to look for as your child gets older.
- Don't forget the rest of the family. Siblings can be affected by the instability that comes with some special needs behaviors and marriages are often rocked by the stress. Counseling may be helpful for all family members.
- Keep a record of everything.