Raising An Autistic Child In NJ Is Harder Than It Has To Be, Mom Says

NEW JERSEY — Victoria Stockdale has spent years advocating for her autistic son Zachary, and whether it's trying to find him the right school, obtaining supplementary care or keeping a roof over their heads, she has found assistance and compassion lacking at times.

In a state with the third- highest rate of childhood autism in the country, Stockdale and other parents say they have found it difficult to get the help they need, from respite caregiving to behavioral therapy to complex medical care.

Zachary, who is 18, was diagnosed with autism and ADHD at age 4. Victoria, a registered nurse, is separated from Zachary's father — and as a single, working mom, she said she's had difficulty in the past knowing what services to seek for her son, and how to access them.

“When you’re trying to work, and you’re trying to provide for a child, and you’re trying to have a little time just to figure things out, it’s very difficult,” she said.

The last half of 2024, especially, was challenging: Zachary was dismissed from his high school for fighting, after his mom said other students were calling him “retarded” and egging him on. The Stockdales’ lease was also terminated at their Parsippany apartment complex, after an agitated Zachary broke Victoria’s car windshield with a chair and pounded on the hood of several other peoples’ vehicles in June, prompting a police response.

And in mid-November, after yet another trip to the hospital, Zachary entered a several-month crisis intervention program in a group home in South Jersey.

“It was so scary to say, ‘I need to place my child,’ when I know that no place is 100 percent safe and secure,” Stockdale told Patch.

The changing face of autism

Close to 3 percent of New Jersey children (about 1 in 35) have been diagnosed with autism spectrum disorder, according to the most recent research from the Rutgers New Jersey Medical School's New Jersey Autism Study and the Centers for Disease Control and Prevention.

Dr. Walter Zahorodny is the program director for the NJ Autism Study, which monitors how many children are diagnosed with autism and when they are first evaluated, among other characteristics. The rate has been increasing since the study began in 2000, with research updated every two years.

"The increase in autism has been very broad, and it seems to affect children across wealth and across different economic and racial strata," he said. "It's not a rare disorder, and it cuts across groups in all communities. To help children or individuals with autism, comprehensive planning and resource allocation is needed."

In the most recent version of the New Jersey Autism Study, the percentage of Black and Hispanic 8-year-olds diagnosed with autism was higher than the percentage of white children for the first time. More Black children with autism also had intellectual disability compared with children from other racial ethnicity groups.

"The distribution of autism has shifted," Zahorodny said. "It used to be that autism was over-represented in high-income communities and in white families. Now, children from Black, Hispanic, or Asian backgrounds, as well as children from low-income families are more likely to be diagnosed with autism than what was the case previously."

And that is not unique to New Jersey, as data from the 11-state Autism and Developmental Disabilities Monitoring (ADDM) Network shows.

Zahorodny said the rate of profound autism, which distinguishes people who have higher support needs, has also been rising.

About 27 percent of both adults and children with autism are also estimated to have an intellectual disability, as mentioned in an August report by the state Ombudsman for Individuals with Developmental Disabilities and Their Families.

And, thousands of children and adults also exhibit “severe challenging behavior” – such as aggression, property destruction, and harming themselves or others.

Some crisis situations see children and adults end up "being arrested or taken by the Police to hospital emergency rooms, where they stay for several hours or several weeks before being discharged on an unhealthy (and often, unhelpful) mix of psychotropic medications," the Ombudsman said.

And, Zahorodny noted that a shortage of direct care staff means families are forced to wait longer to see occupational therapists, speech pathologists, and other specialists.

"Many places have waiting lists of over six months to get a child suspected of autism their evaluation," he said.

Ombudsman Paul Aronsohn, whose office was established in 2017 to keep record of families’ complaints about access to state services and help them navigate the system, said severe autism “continues to be one of the most consequential challenges facing New Jersey families and communities."

On average, there are 53 New Jerseyans with severe autism per town/municipality, the Ombudsman's report noted.

Aronsohn’s most recent report called for the state to consider a universal screening policy for earlier intervention and treatment, developing “best practices” for responding to a severe challenging behavioral crisis, and encouraging local and county governments to adopt autism-friendly law enforcement practices.

“Simply stated, without urgently needed reform – without a more comprehensive, more resource-rich approach that begins with early intervention and treatment – severe autism will continue to imperil the lives of many New Jersey children, adults, families, and communities,” he wrote.

For parents like Victoria Stockdale, raising a child who exhibits harmful behaviors can mean making difficult choices — such as taking her son to the hospital when he is exhibiting behaviors that can harm himself or others, and taking the steps to place him in crisis intervention this fall.

"With the (Care Management Organization), we've been talking about this a long time, and I said, 'well, we've got to do something different to get different results,'" she said.

"There was nothing that I could do about it, but take him to the hospital to keep him from hurting himself or others," she said.

He swims with Special Olympics, which his mother calls a "saving grace."

Zachary is also among those autistic New Jerseyans classified as having an intellectual disability, and his diagnosis also includes ADHD, mood disregulation, and oppositional defiant disorder, his mother said.

And though he is not non-verbal, he does shut down when he gets upset. He can get agitated at unexpected loud noises, when people are staring at him, or if classmates harass him. Stockdale said they have dealt with stares and complaints from neighbors at their Parsippany apartment complex.

He has had several interactions with Parsippany Police, and Stockdale says the officers have been understanding with Zachary's behavioral challenges — including when police were called to their apartment complex in June, the incident which ultimately led to their lease being terminated. Parsippany does have two officers trained in the state Autism Shield program.

"They knew exactly that he had a lot of barriers to communicating, and they saw that he was very powerful," she said.

As of mid-January, Stockdale was searching for a permanent place for her and Zachary to live, after a hardship extension at Troy Gardens ended. She has been living in an extended-stay hotel in the meantime.

Stockdale went to court to try and stay in the apartment for the time being, but was told she had to leave even though Zachary is not currently living there. She also reached out to her representatives in Congress and to HUD to see if they could help her and Zachary, or assist her in securing funding for a new place to live.

"I gave up my treasure, and I'm still being put out on the street," she told Patch on the day of that court hearing. "It doesn't seem right to accept it."

Legal representatives for Troy Gardens did not return Patch's request for comment.

Stockdale successfully fought an eviction back in 2016 in Riverdale, when Zachary was 10 years old, and said other residents had complained about him screaming.

Creating ways to bridge the gap

The Stockdales’ story was familiar to Nadine Wright-Arbubakrr of East Orange, who is also the mother of an adult son with autism.

"I know firsthand what Victoria has experienced with Zachary," she said. "I, too, have experienced that I had to put my son in crisis, one of the things I never thought I would have to do. I understand the behaviors can be challenging, and I do understand at some point, decisions have to be made."

Wright-Arbubakrr is the founder of the nonprofit Nassan’s Place – named for her son, who is 20 years old now. For 12 years, Nassan’s Place has organized social outings for autistic children and their families, and provided both educational resources and support to caregivers.

Nassan was diagnosed with autism when he was two years old, and Wright-Arbubakrr recalled feeling isolated from other parents.

"He had behaviors that were very, very, very challenging," she recalled. "No one wanted to watch him. I didn't take him out."

She said there were few opportunities in urban Essex County for Nassan to feel like part of the community. And when she and her family were exhausted and needed a break, the nearest option for respite care was 90 minutes away.

“I didn't realize how much more was needed,” she said. “I was just looking to have a support group so I can talk to other parents and find out how they deal with it. And I wanted a mental break, because it was overwhelming.”

So, Wright-Arbubakrr began connecting with other families, and learned that they also hesitated to take their children out to events for worry about people staring, or making disparaging remarks. She also said that within some minority communities, people can hesitate to talk openly about autism and disabilities.

"I said, 'our children deserve to be part of the community,'" she said. "And I started offering the things that I wanted for my son."

Over the years, those activities have comprised sensory-friendly movie days at CityPlex 12 in Newark, after-school programs, inclusive holiday celebrations, and even summer camps.

Along with providing a place for autism families to gather, Nassan’s Place also works to educate parents about the resources available for their children.

For example, Wright-Arbubakrr says some inner-city families didn't know that they can get services and support from the Department of Developmental Disabilities or that their autistic child can attend school until the age of 21. She said that school districts and parents must work together to share information and advocate on behalf of all children.

"I started to see the horror stories with other families...who weren't told what their children were entitled to based on their autism diagnosis," she said. "They weren't getting the information. They didn't hear about it. And again, they had that stigma; they didn't go out."

Wright-Arbubakrr also mentioned PerformCare, which is a state behavioral health services organization, and the Personal Preference Program, which allows parents or guardians to receive payment for taking care of their disabled child.

Nassan's Place also offers emergency respite for parents who are in a crisis situation, whom Wright-Arbubakrr said need immediate support.

"These families are dealing with these children with these behaviors," she said. "They can't wait."

Stockdale said that Wright-Arbubakrr has been a great resource for her in advocating for support services and Zachary’s needs, or if she just needs someone to talk to.

"I can't tell you what she has done for me just by picking up the phone," she said.

She has also relied on the Mom2Mom peer support hotline, which connects mothers of special needs children and adults with other moms of similar circumstances, who are specially-trained in crisis support and peer counseling.

“Over the years, I have met people who have put me in a good place to question doctors, question other parents, and seek advice,” Stockdale said. “That’s what has saved me, getting the advice from other parents. And just following your own voice.”

Navigating the 'services cliff'

There are an estimated 156,000 New Jersey adults with autism – 44,000 of whom also have an intellectual disability, according to the Ombudsman’s office.

In New Jersey, the Department of Children and Families, Children’s System of Care (CSOC) serves youth under age 21 who have emotional and mental health care needs, substance use challenges, and/or intellectual/developmental disabilities. The age of 21 is also the cutoff for education services.

Karen Millican, CCO for North Jersey-based Joy Dew, spoke of a “21 cliff” or “service cliff” that adults with special needs reach, when they are no longer eligible for as many support services and programs, and there are few transition programs available to get them ready for a productive and satisfying career after school.

"That's sort of the known age at which between 18 and 21, basically, you educational life is over. You used to be going to school every day, you had a routine."

North Jersey-based JoyDew works with young adults with autism, helping them identify their strengths and find pathways to training and employment in a number of fields including medical imaging, robotics, big data analytics, and multimedia. They also help educate parents on how to find resources and support.

And though the state has made strides in bridging the gap between childhood and adulthood services and supports, the efforts have not reached everyone.

Each year, about 2,875 students with disabilities who are eligible to receive services from the DDD graduate from high school in New Jersey. But only 1,100 to 1,400 new adults registered for services with the state in the past two years, the Ombudsman’s report said.

“Fortunately, here in New Jersey, there are a lot of resources for adults with disabilities, and there is no need for anyone to 'fall off the cliff,'" he wrote. "Unfortunately, however, not everyone is aware of the resources available, and many young people and their families struggle their way through important milestones, missing opportunities along the way.”

Helping young adults transition from high school to the workplace is what Millican and the team at JoyDew strive for during their day program, which began in Ridgewood and recently opened a new center in Livingston.

JoyDew works with each person to assess their strengths and what they’re interested in doing, before helping them plan their future and/or get ready for life in the workforce. They work on communication skills, and ensure each member has a way to share their needs and ideas.

"A lot of people with autism have certain types of strengths, so we're looking for those things that are common, but also that individual strength," she said.

Millican said that many people on the autism spectrum have heightened abilities to recognize patterns and notice small details, so JoyDew members have excelled in identifying anomalies on breast cancer pre-screenings, spotting financial fraud, or testing headset equipment for Bose. Others are interested in robotics, multimedia, or cybersecurity.

"Each person is different, they can do different things," she said. "Once they align it, they can go through a process to become employable."

JoyDew has contracts with different companies, and employs their members to complete work in an autism-friendly environment. Staff also teach social skills and what typical business environments are like, to help with members' transitions into the workforce. Some members also have challenges with fine motor skills, so JoyDew works to make sure they can learn and work comfortably.

"They're not expected to be dropped into a neurotypical environment and all of a sudden have to be able to navigate," Millican said. "That doesn't really work for most of them."

And while they're getting ready for their dream careers, the young adults at JoyDew are also finding a community of friends.

As they are interested in advocating for the community, JoyDew members have also worked with police officers in Ridgewood and doctors at Jacobi/Montefiore Medical Center in the Bronx to foster a better understanding of how to communicate with autistic people in medical settings or interactions with law enforcement.

"If we teach the first responders or the physicians about these things, it really helps them when they are trying to calm someone down in order to figure out what's going on with them," she said.

As for Zachary, who is close to finishing his senior year of high school, space travel is a particular interest. Stockdale said he enjoyed trips to NASA facilities in Houston and in Alabama, when visiting her family.

"He's challenged by very simple things, but he can figure out things that are very complex, such as puzzles," she said.

She said staff at the NASA Space Center were "floored" by his breadth of knowledge about the cosmos during the visit, and she has considered sending him to Space Camp. But for the moment, he is settling into a new school routine, with his mom keeping a careful eye on his progress at the group home.

"Sometimes, you have to follow your own intuition and know that you're their only advocate," she said.