Autism has been characterized as a neurological disorder affecting a person’s social skills, learning ability and communication acumen, but more is known as to what autism is not than what it is. Researchers have been trying to decipher the mechanisms that cause autism for more than a century.
In 2013, the American Psychiatric Association merged four distinct autism diagnoses into one umbrella diagnosis of autism spectrum disorder (ASD). They included autistic disorder, childhood disintegrative disorder, pervasive developmental disorder – not otherwise specified (PDD-NOS), and Asperger syndrome.
According to the Centers for Disease Control, autism affects an estimated one in 54 children in the United States today. Most children are diagnosed with the disorder at age two or three. Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.
One of the many programs run by Chabad is the Friendship Circle, which pairs Jewish teens with special needs children (who are not necessarily Jewish) for an hour or two a week in order to give parents some respite from the grueling lifestyle of raising a child with special needs, including autism.
In Albany, NY, the Friendship Circle is run by Chaya Rubin under the auspices of the Chabad Lubavitch of the Capital District.
On a recent warm summer day The Jewish Press was invited to watch Judicial Hearing Officer and acting Albany County Court Judge Rachel Kretser along with her certified therapy dog Woodstock, a Maltese, provide a reading program for several children with autism. She read two books the children picked from a wide array of choices. She told her audience to call her Judge Rachel.
“The children seemed transfixed with the books I was reading but most of all I think they enjoyed Woodstock,” Kretser said. “He performed jumping through a hula hoop several times and danced around for his treats, and that broke the ice, and the smiles from the children speak volumes.”
Kretser says she does this volunteer work for personal reasons. “As a Jew we grow up with tikkun olam, making the world a better place and to give back to our community,” Judge Rachel told The Jewish Press. “I get more out of doing this than the children do. For every bit of joy I bring to them I reap so much more. Simply put, doing good, feels good. It’s something I instilled in my son.”
Several parents, including government officials, who raise children with autism expressed their frustration with the lack of government support provided to this vulnerable population.
“My oldest child, Ari, is not conversational. You can’t have a conversation with him,” said Robert Kasper of Delmar, NY. “You can communicate with him. You can tell him things. He can answer your questions – but there is no communication. There is no reciprocity. There is no theory of mind. He’s not predicting what you’re thinking. He’s not overly in tuned with your feelings…. He’s not able to predict your emotions and he’s not able to communicate.”
Dutchess County Executive Marcus Molinaro (R-Red Hook, Dutchess County) says he is fed up with the bureaucracy surrounding obtaining aid for children with autism. His daughter, Abigail, 17, is on the autism spectrum.
“We have not summoned the courage of creativity necessary to break down all the barriers. [The state has] performed abysmally in particular during these last 18 months when it comes to supporting this population during the pandemic. The governor has used this population as leverage and frankly it’s disgusting,” Molinaro told The Jewish Press.
“It’s a full-time job just connecting to the available resources and it just shouldn’t be. In order for my daughter to enter school I have to go through a series of hearings, meetings and get her evaluated. In order for my [three] sons to walk through the door, all they have to do is walk through the door.
Four members of the state Assembly and one in the state Senate have children on the autism spectrum. One member has a son who is like Kasper’s 23-year-old son Ari.
“My son Justin is 21 years old and is transitioning from Pleasantville High School this year to the adult world,” said Assemblyman Thomas Abinanti (D-Greenburgh, Westchester County). “Justin is partially verbal. He uses one word instead of sentences. He will not carry on a conversation about needs…. There is a saying ‘You meet one person with autism, you met one person with autism.’
A diagnosis of autism can be daunting to parents. Kasper acknowledged that “when Ari was born and diagnosed with autism at age two it was a shock. There was a mourning period because I didn’t understand autism at the time. There was a lot of uncertainty and a lot of unknowns.
“If I knew then what I know now I probably wouldn’t have been as emotional about it at the time but now it’s the new normal,” Kasper said.
“We really didn’t understand what the limitations and challenges would be,” Abinanti recalled. “We worked with him (Justin) and we work with him a lot. We didn’t fall apart. We just saw this as a challenge and we were going to make it work.
The Kaspers had another child who was diagnosed with a developmental disability a couple of years after Ari was born.
“My other child, my middle one, Lexi, she is more like an Asperger’s because she’s verbal, she’s higher functioning, she’s able to communicate and converse, she can predict your emotions more or less, she’s very concerned about how another person feels, too.”
Molinaro, speaking about his daughter Abigail, said he took her diagnosis in stride.
“With each of my kids, they are who G-d made them to be,” he said. “I can’t say that it was an overwhelming feeling. It was just a different way of looking at how she is going to have to live her life and we’re going to have to raise her. We all have our challenges. Raising kids is never easy. We just have to learn how to do it with each one of our children. We have four. She has her own special way of confronting life’s challenges. She is who she is and we learned to navigate the world the way she experienced it.”
By all accounts early intervention education is paramount to having a successful outcome with children diagnosed with autism.
“Early intervention is very important to Justin and so many other kids,” Abinanti said. “We thank Mario Cuomo for creating the program that was a model, and his son Andrew has thrown stumbling blocks in the way of it functioning properly from the day he got in the governor’s office. To him, money is more important than kids. The Office of People with Developmental Disabilities (OPWDD) is standing in the way of providing person-centered services. The only person they’re centered around is the governor. More and more the state is failing.”
A measure passed both houses of the legislature during the last days of the session earlier this month aimed at transferring the onus of filing claims away from providers and individuals and force health insurance companies to pay $40 million a year to the state to fund early childhood intervention programs.
The measure was sponsored by Senator Elijah Reichlin-Melnick (D -Nyack, Rockland County) and Assemblywoman Amy Paulin (D-Scarsdale, Westchester County). The justification for the legislation was in part to get a consistent funding source for the program. The bill memo states:
“The early intervention program was established under the Public Health Law and the federal Individuals with Disabilities Education Act (IDEA) to enhance the development of infants and toddlers from birth to age three who have a significant developmental delay or disability, as well as enhance the capacity of families to meet their children’s special needs. The program seeks to identify and evaluate as early as possible those infants and toddlers whose healthy development is compromised and to provide for appropriate therapeutic and supportive services. With early intervention, we can reduce the number of children with disabilities or reduce the severity of their disabling conditions.”
The governor has until the end of the year to either veto or approve the measure.
Housing for people with autism is also a problem. Kasper is hoping to get Lexi, who will turn 20 in August, into a group home when she is ready.
“My daughter Lexi has said to us she wants to live in a group home,” he said. “I know people who live in some group homes and some of them are nice, a lot of them have good lifestyles, they’re well-kept but it’s not for the lower functioning. Lexi would be a good candidate for a group home. I’m not as nervous about her as I am about Ari who doesn’t have a voice.”
Abinanti, who is the chairman of the Assembly Committee on Disabilities, says the OPWDD, which was set up to help this population, has become a hindrance to providing housing for the disabled population.
“Right now there are 1,500 vacant beds in the private sector in group homes,” Abinanti says with frustration. “There are 5,000 people on a waiting list for beds. OPWDD refuses to fund the beds. It’s not a question of creating them or building group homes. This is a matter of allowing the spot to open up and provide the funding stream.”
There are two main issues with the care for the disabled population that bother Kasper: the quality of care offered to lower functioning children and adults with autism, and the disparity between the level of care seniors receive as compared to the disabled and the pay the workers who take care of the disabled receive.
“There are group homes for the higher functioning disabled adults. For the lower functioning disabled population, it’s hard to get into a group home. A lot of the housing situations for the disabled are atrocious,” Kasper said. “Many group homes designed for someone like Ari – who doesn’t communicate, doesn’t have a voice – they are very few and far between and they are frequently closed down because of corruption, abuse and deaths… If you don’t have a voice, if you don’t have a vote, your only hope is to be in a warehouse where it’s not going to cost a lot and [they] can shut the door and go away. That’s my fear.”
To potentially rectify those fears, Abinanti says some private groups are taking matters in their own hands.
“We are in the process of trying to devise a solution similar to what the people in Rochester are talking about. We and many people around the country are finding that the systems are not working for their kids so they’re going to do their own thing,” Abinanti said. “And just like for seniors, they’re building intentional communities. Intentional communities are places where people with disabilities can live together, not be required to…. They can go out during the day and go off to jobs or day habilitation programs, depending on their challenges. They may go off to physical therapy, occupational therapy, job training, whatever, but this is their home. They have a right to live where they want, and OPWDD refuses to recognize that.”
Abinanti had some limited legislative success this past session. He sponsored 22 bills relating to autism or mental health disorders. Three measures passed both houses and are on their way to the governor for his approval or veto later this year. Ironically, Abinanti held four of the 22 measures in the committee he chairs. Six measures were one-house bills, which had no Senate sponsor.
Assemblyman Angelo Santabarbara (D-Rotterdam, Schenectady County), chairman of the Subcommittee on Autism Spectrum Disorders and a member of the Assembly Mental Health Committee, sponsored nine pieces of legislation relating to autism or mental health disorders. The measures had no Senate sponsor and didn’t see the light of day as they were bottled up in several committees. Santabarbara was not available for comment. (Santabarbara has a son, Michael, who is also on the autism spectrum.)
“What we need to do going forward is to figure out a mechanism to allow these people to fully participate in the community,” Abinanti said. “We’ve got to teach the community about the worth of people with disabilities and how they can fit into the community.”
