By Kathryn Walsh and Lisa Cesarano
As mothers of children with autism, we know what it’s like to live in a world that has been turned upside down and inside out. From the devastation of the diagnosis; to the hours of reading, research, and therapies; to the recognition of our children’s challenges and appreciation for their strengths, we have been there. And after 30 combined years of learning about autism spectrum disorder (ASD), what we’ve come to recognize is: There’s always something you don’t know. Hence, the genesis of this resource guide.
According to the Centers for Disease Control and Prevention (CDC) estimates, one in 59 children in the U.S. has autism spectrum disorder. Of the 448,926 children in the Hudson Valley, an estimated 3,662 live with autism. According to some studies, ASD can be detected as early as 18 months or younger by specialized screenings, such as evaluating eye tracking in infants.
Life on the “spectrum” can range from being non-verbal and in need of substantial support to success as high-functioning members of society.
Thanks to the New York State Autism Insurance Reform Law of 2014, insurance companies are now required to provide access to services such as Applied Behavioral Analysis (ABA), speech therapy (ST), occupational therapy (OT), and physical therapy (PT) to autistic individuals.
While autism is incurable, early diagnosis and intervention and increased awareness are helping many individuals with autism lead fuller lives.
“Be aware that autism can manifest at an early age,” says Kenneth Bock, MD, of Bock Integrative in Red Hook, an internationally known pioneer in the field of integrative medicine. “My main message is figuring out what’s going on with each child through subtyping, and then optimizing their function and their skill sets. I want to give parents ‘realistic hope.’ There are individuals with autism who are amazing artists, sculptors, engineers, computer programmers, and math savants.”
The Hudson Valley has access to many exceptional service providers. But for overwhelmed parents, it isn’t always easy to find them. What follows is a primer of what to expect and what you can do at different stages of your child’s life.
The years from birth to toddler are key to assessing issues and obtaining services early on that will help ensure your child’s development, and help you understand and address issues.
If you suspect your child has a delay contact your pediatrician and your county’s Early Intervention Program, a service through the Department of Health; they may suggest you schedule an evaulation.
If your child is diagnosed with ASD or any developmental disability, contact the Office for People with Developmental Disabilities (OPWDD), which coordinates services and support, such as Medicaid and respite. The first step to receiving OPWDD services is called the Front Door, which connects people to the services. You will then work with a Care Coordination Organization and Care Manager to develop, implement and maintain your child’s Life Plan (a document defining person-centered habilitative goals/valued outcomes).
Contact your insurance company, as well. “It’s possible to access additional services,” says Sheryl Frishman, a special needs attorney and social worker, and the clinical supervisor and director of Parent and Community Outreach at ACDS, a lifetime services agency based in Westchester and Long Island.
Early Intervention therapies can include speech, occupational, physical, and Applied Behavioral Analysis (ABA). “One factor that drives [progress] is good assessments,” says Lee Englander, program coordinator for the Autism Center at Westchester Jewish Community Services (WJCS). ”It’s important to understand what your child needs.”
According to Kenneth Bock, MD, you may want to look for potential underlying biomedical factors to behaviors such delayed speech, and unusual socialization and play patterns. These can include belly pain, immune deficiencies, brain inflammation, and a gastrointestinal metabolic system that is imbalanced and disrupted. In some cases, says Bock, “Dietary changes, along with target nutrients, can lead to changes in six months.”
Frishman advises family counseling. “You’re learning to parent, given a new set of circumstances,” she says. “Parents of special needs children have special needs, too.” Englander echoes that sentiment: “It’s important to find balance in the family. If you burn out, you can’t take care of your children.”
When children turn 3, they age out of the Early Intervention system and into the Preschool Special Education system. You will then work with the Committee on Preschool Special Education (CPSE), which is chaired by a representative of your school district. If your child is found eligible for CPSE services, an Individualized Education Program (IEP) will be developed, based on evaluation results, and will include recommended services — such as speech and occupational therapy — to be provided. (Go to www.nysed.gov for more.)
“After Early Intervention, we recommend that a lot of these students receive pre-school programs from 3 to 5 years old, using co-teaching models so they get educated along with their typically developing peers,” says Carol Gearing, director of the Life Planning Office at The Arc Westchester. Organizations such as Abilities First in Poughkeepsie have early childhood programs from birth to age 5, plus many more services for an individual’s lifespan.
Citing the high rates of divorce among parents of children with autism, Susan Varsames, founder of Holistic Learning Center in White Plains, acknowledges, “This is hard work. Find your tribe.” Service dogs — such as ones from Hopewell Junction-based BluePath Service Dogs — can also help families find peace of mind. Make sure to look into respite services through OPWDD, so you can take a break and know your child is in good hands.
Sensory gyms such as Zen Zone in Croton-on-Hudson and trampoline time at Bounce! in Poughkeepsie (which has Special Needs Mondays) help children regulate sensory input, which can lead to greater calm and focus. Art therapy and music programs such as HeartSong in White Plains, can also be beneficial.
During the elementary school years, parents, teachers, and the school support team work toward progress on the child’s Individualized Education Program (IEP). The IEP is reviewed and, if needed, modified or revised by the Committee at least once a year (this is referred to as the annual review). The student has a reevaluation at least once every three years, to review the need for special education programs and services and to revise the IEP, as appropriate.
In this age range, learning and social dynamics can change quickly. A local school that worked when a child was in kindergarten may not work in third grade. If your school district is not fully meeting the range of your child’s needs, “It’s best to try a collaborative approach first,” advises special needs attorney Sheryl Frishman. “If a parent is considering changing schools, they should first approach their current school about their concerns. If the school cannot meet their needs, it is the school that actually reaches out to other schools to explore a potential transfer.” Options may include BOCES programs, private schools, and residential schools. Services of a special education advocate or attorney may be necessary (see page 71 for more).
Joining sports programs for developmentally disabled children — such as Miracle League, American Youth Soccer Organization’s VIP program, and Little League’s Challenger Division may help build both athletic and social skills. Greystone Programs (servicing the Mid-Hudson region) and Nor-West Regional Special Services (lower Hudson Valley) provide therapeutic recreation services to kids and adults with developmental disabilities, including autism. Be sure to apply for OPWDD services and Medicaid coverage, if you haven’t already.
At this age, some parents may choose to manage high energy levels, inability to focus, seizures, and depression with medication. According to the CDC, there are no medications that can cure ASD or even treat the main symptoms. But there are therapies that can help some people with related symptoms. “As puberty approaches, social skills training and therapies to relax adrenals and balance hormones may be required,” says Bock. If you have a question about treatment, talk to a healthcare provider who specializes in caring for people with ASD.
Like their typically developing peers, kids on the spectrum may greet adolescence with moodiness and defiance, which can sometimes lead to setbacks in treatment plans. For the early years of this age range, try to manage the mood swings and irritability of adolescence so that the child can continue to develop to his or her unique potential.
Start the guardianship process, if you think your child will not be able to make their own decisions when they turn 18. At that age, you are no longer the legal guardian. Guardianship needs to be formalized with a petition to the court. At 18, you may also apply for Social Security Disability Insurance (SSDI) for your child.
With an IEP established, kids continue to work toward their functional goals. Triennial evalutions still occur, and annual reviews occur to assess progress and to make necessary adjustments. During high school, transition planning will begin. This can be an involved process, says Frishman, so best to allow extra time. “Plan for the first day after the (school) bus stops coming,” says Frishman. “Start exploring agencies with adult services and schedule day visits.”
Families may begin to avail themselves of more recreation and respite programs that provide teenagers and parents time apart, promoting independence for the child and relief for the parent. The Arc Westchester’s respite home is staffed 24 hours and is open seven days a week, year-round for adolescents and adults. You must be in the OPWDD system to receive respite services (see Birth to Age 3 section).
Young adults on the spectrum age out of the school system at 21, but may need ongoing support to help them become independent, self-sufficient, and to find their niche. The goal is to secure day programs and/or vocational opportunities before they leave high school, so there is no gap in services after graduation.
Supported employment services at organizations such as The Arc Dutchess offer resume development, on-the-job-training, and career exploration. The services are supported by funds from Adult Career and Continuing Education Services (ACCES-VR), OPWDD, and Office of Mental Health (OMH).
There are many organizations throughout the Hudson Valley that also have community-based and residential services. KEON Center in Peekskill and Greystone Programs in Hopewell Junction, are among them. “An OPWDD review of eligibility will determine the types of services for which a person may be eligible, and the scope of those services,” says Nathan Briggs, director of Residential Services at Greystone Programs.
Long-term residential options should also be explored at this stage for that day when your child will no longer be living with you. Your Care Manager, OPWDD, and organizations such as The Arc, Abilities First, and Putnam Independent Living Services can assist with this, as well.
According to the Centers for Disease Control and Prevention a person with ASD might:
• Prefer not to be held or cuddled
• Not respond to their name by 12 months of age
• Not point at objects to show interest (point at an airplane flying over) by 14 months
• Not play “pretend” games (like “feeding” a doll) by 18 months
• Avoid eye contact and want to be alone
• Have trouble understanding other people’s feelings or talking about their own feelings
• Have delayed speech and language skills
• Repeat words or phrases over and over (echolalia)
• Give unrelated answers to questions
• Get upset by minor changes
• Have obsessive interests
• Flap their hands, rock their body, or spin in circles
• Have unusual reactions to the way things sound, smell, taste, look, or feel
Meet Lorrie and Owen Kruger
Like many moms of children on the spectrum, Staatsburg resident Lorrie Kruger had no clue what autism was when her son, Owen, was diagnosed.
“I was noticing different things missing, but I couldn’t put my finger on it. People said, ‘Don’t compare the milestones of your kids,’ and I didn’t,” recalls Kruger.
But one day, in the waiting room of a doctor’s office, she was struck by how different Owen was from her two other children. After that appointment, she picked up a book by Kenneth Bock that included an autism checklist, and Owen, who is now 15, hit every single marker except two.
The Rose F. Kennedy Children’s Evaluation and Rehabilitation Center in the Bronx told her that Owen needed Early Intervention services, and he saw different therapists multiple times a day.
“It was tough earlier on. He would rage — take out TVs, smash out windows,” Kruger says. “He wouldn’t sit in a chair; he only sat on the floor.” Her family, she says, was in “lockdown mode” until they met a special aide. “Lindy worked wonders with him. He got calmer as he learned to communicate more.”
Still, over time, it became clear that Owen’s needs would surpass his family’s bandwidth. He began a residential program at the Anderson Center for Autism in December 2018. There, he participates in activities and hones skills like crossing the street, personal hygiene, and bathroom skills. He partakes in campus programming (like bowling and art club) and take trips into the community with his classmates.
“There, he has a more interactive life,” says Kruger. “It’s like he went to college a little earlier. I have mixed feelings about it. At times I’m good with it, but when I drop him off, I still cry.”
To help manage, Kruger stays in close touch with his house mom, takes him out once a week for dinner, and alternates weekend visits with Owen’s father.
“I feel like this adjustment has been harder on me than it is on Owen,” she adds. “I do feel like it was the right thing to do.”
This not-for-profit organization provides education, support and outreach services. Its residential program for children welcomes those up to to age 21 who have received an autism diagnosis. Individuals in the adult residential program live in homes known as Individual Residential Alternatives in Dutchess, Ulster, and Orange counties. Anderson Center’s treatment approach is based on the principles of Applied Behavior Analysis (ABA), and it employs 850 specialists who are expertly trained to diagnose, treat, and care for those on the autism spectrum.
Devereux New York provides a wide range of educational, clinical, residential and community-based programs and services for those with intellectual and/or developmental disabilities, including ASD. Devereux’s Red Hook campus offers day school and residential programs for children ages 5–21. Devereux New York CARES in Mount Kisco offers year-round, full-day, intensive educational and behavioral interventions for children. For adults, there are several types of off-campus residential options in Columbia, Dutchess, Ulster and Westchester counties.
Red Hook, Mount Kisco; www.devereux.org
This Sullivan County-based center is the largest residential provider in New York State for children with signficant and complex disabilities. It offers residential programs for children and adults, as well as medical, clinical, and special education programs. Northwell Health recently signed an affiliation agreement with the Center for Discovery, where the two organizations will work together to meet the needs of individuals with developmental disabilities.
Shrub Oak International School is a world-class, private special education boarding and day school empowering autistic students to develop the skills necessary to manage their lives to their highest potential and celebrate their individual strengths.
Mohegan Lake; www.shruboak.org
There are special services and considerations offered to individuals with ASD and other disabilities and their families. Here’s just a sampling:
As required by the Americans with Disabilities Act of 1990, each county operates ADA Complementary Paratransit Service for qualified individuals who are unable to use fixed-route bus service due to a disability.
For more information, refer to your county’s government website, e.g. www.dutchessny.gov
Passengers with disabilities may be eligible to save 50 percent off travel. A developmental disabilities ID card is required for the discount.
The Transportation Security Administration’s TSA Cares is a helpline that provides travelers with disabilities additional assistance during the security screening process. Passenger support specialists, who provide on-the-spot assistance, are also available. Call 72 hours prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint.
New York State Parks & Historic Sites
The Access Pass offers residents of New York State with free or discounted use of state parks, historic sites, and recreational facilities.
Playland Park in Rye hosts a Day for People with Disabilities one day per season. People with disabilities, as well as their families and caregivers, can enjoy free, unlimited rides. On any day, individuals with disabilities may get a VIP wristband at Guest Services for themselves and a guest, which allows access to rides through the exit, thus reducing time spent in lines.
Several movie theater chains enable individuals with autism and their families to enjoy films with the lights turned up and the volume turned down, in recognition of sensory sensitivity.
TDF Autism Friendly Performances present Broadway musicals and plays in a friendly, supportive environment.
Drawing on her dual background as a special needs attorney and social worker, Sheryl Frishman of ACDS advises parents to “get educated and tap into the diverse resources we have in the Hudson Valley,” adding that from a legal perspective “there is no reason to engage with an attorney if there are no issues accessing necessary services.” An example might be when parents are in disagreement with the program or services offered in an IEP, and cannot reach a compromise with the school.
However, creating a will that includes suggested guardianship is a must, says Frishman. “It’s a bizarre thing to think about, but it’s important to have a will in place if, God forbid, something happens to you.” Because the guardianship will endure into the child’s adulthood, it must be confirmed in court at age 18.
Also, “Take a look at your financials,” she advises. “It’s important to ensure that there is no money in the child’s name, since that could impact benefits the child receives.”
Though not a legally binding document, “It’s important to develop a letter of intent for individuals with disabilities, spelling out exactly what you want for them, a road map in case you are not there,” says Lee Englander of WJCS. “It should detail medications, allergies, friends, services, preferences, all people to call on for support, and more. Include your challenges and hopes and dreams for them, and how you see your child 10 years down the road.”
How Rhinebeck became the Hudson Valley’s first Autism Supportive Community
By Sally Parker
When Anderson Center for Autism, one of New York State’s premier autism treatment and care centers, approached Rhinebeck Mayor Gary Bassett in 2018 with a proposal to create an Autism Supportive Community, he jumped at the chance.
“It took me literally three seconds to say yes,” says Bassett, who recognized the need to make the village more accommodating for individuals with autism spectrum disorder (ASD). And who better to work with than Anderson, located in nearby Staatsburg.
Things that don’t disturb most people — like flashing or bright lights and specific sounds or pitches — can cause sensory overload for individuals with ASD. Their families avoid going out to eat and attending public events because of this, says Katy Kollar, president of Anderson Family Partners, and whose son Owen is a student at Anderson.
From the start, the effort was a community partnership led by Anderson, which provides support and training on autism spectrum disorder and related developmental disabilities to families, businesses, school districts and agencies. Officials there knew families with children at Anderson had few local restaurants they felt comfortable in as a family, spurring center officials to approach Rhinebeck about a comprehensive approach to the issue. The partnership with Rhinebeck is its first with a municipality.
“It was a recognition that there is a large number of people living with, caring for or having autism themselves, and a recognition that we could do better,” says Eliza Bozenski, chief development officer at Anderson and host of 1 in 59, a podcast that explores ASD.
With a $10,000 grant from the Thomas Thompson Trust, Anderson helped the village form a committee of residents and members of Anderson’s consulting team. They created a model with a vision, mission statement, and objectives that met grant requirements. “Do One Thing” to accommodate people with ASD became the effort’s motivating hashtag. For six months starting in November 2018, the committee held six educational forums that drew more than 250 people.
Committee members called on businesses and organizations in spring 2019 to ask if they would “Do One Thing” to be more inclusive. Their responses were surprising.
“They said, ‘Tell me how I can be more supportive.’ We didn’t expect them to be so positive,” says Kollar, who is on the committee. “They’re willing to have our community come into the stores. The welcoming has been outstanding.”
Similar efforts include ThinkDifferently, a Dutchess County campaign launched in 2015 by County Executive Marcus Molinaro, who has a daughter with ASD. The initiative seeks to change the way individuals, businesses, organizations, and communities relate to our neighbors with all abilities.
Mary Kay Vrba, president and CEO of Dutchess Tourism, has spoken about the mutual benefits of reaching this market on panels at industry events around the country. “It’s really great, because travel should be for everybody. There should be no barriers to keep people from activities that this county and others offer,” Vrba says.
The U.S. travel market for people with disabilities is estimated at $17 million. This is good news for ASD-friendly communities in tourism-rich areas like the Hudson Valley, she says.
Nearly 60 percent of village businesses now do at least one thing differently to provide a better experience — things like faster table service, softer music, LED lighting in place of fluorescent, or a table away from traffic. Ruge’s Automotive offers a sensory-safe space during Sinterklaas and PorchFest. The Episcopal Church of the Messiah is planning a monthly interfaith service for families with ASD. A picture menu is available at Beekman Arms. Anderson students sticker the bags at Samuel’s Sweet Shop. And window decals identify all participating merchants.
In addition, many restaurants and shops now provide sensory kits — noise-reduction ear muffs and squishy toys — to help people with ASD process stimuli. And staff are trained to spot when they’re needed. Rhinebeck police also carry the kits in their cars.
“We were walking around thanking them, and they spent more time thanking people on the committee for the opportunity to think about this,” says Bozenski. “It reinforced it for me: The people who got involved did it at their core, because it’s the right thing to do.”
The Thomas Thompson Trust has provided a $10,000 matching grant for the initiative’s second phase, which will add more businesses and deepen training. Anderson is in talks with other Hudson Valley communities that want to do the same thing.
“This is one of the wonderful outcomes,” Bozenski says. “There is a stronger expectation and hope that this type of initiative will occur throughout the Hudson Valley, and ideally, across the state.”
All of this is part of “unlearning” deeply ingrained assumptions about social behavior, says Sudi Kash, chief clinical officer at Anderson. Each decision to be more welcoming plants a seed for a deeper impact well beyond Rhinebeck. It starts with getting to know the individual.
“This is about changing that sense of what is safe and what isn’t safe,” she says. “It has to do with the evolution of a community and a society. It has nothing to do with sameness, and in fact, it has a lot to do with being different.”
Matching-grant donations to the Rhinebeck Autism Supportive Community Project can be sent to Attn.: Rhinebeck ASC, Anderson Foundation for Autism, 4885 Route 9, P.O. Box 367, Staatsburg, NY 12580. For a video explaining the initiative: vimeo.com/365427206
New York State Education Department
Parent Guide: www.p12.nysed.gov/specialed/publications/policy/parentsguide.pdf
The Hudson Valley Autism Society
Westchester Jewish Community Services