Rising Autism Rates, But Scant Resources: Cedar Grove Group Raises Funds and Awareness With Puzzle Event | Christopher Lotito

A stack of children’s puzzles ready for competition.Photo byChristopher Lotito | Lotito Earth Observatory

In Cedar Grove, a small but determined group of volunteers works to raise awareness about a developmental disorder whose growth is skyrocketing. New Jersey has one of the highest reported autism rates in the United States. A report by the CDC found that one in 32 children in New Jersey is diagnosed with autism spectrum disorder (ASD). Data on dual diagnoses, such as ASD with ADHD or Dyslexia, is limited, but such diagnoses are common. Far from being a warning bell, the prevalence of autism in New Jersey is a diagnostic success story that has been attributed to better awareness and diagnosis, as well as higher rates of education and income.* In other words, it’s safe to assume that many other states have lower reported rates of autism due to a lack of diagnoses. However, getting a diagnosis for autism in New Jersey can be still be prohibitively challenging due to overburdened healthcare systems and a scarcity of qualified developmental pediatricians and neuropsychologists. These professionals are often scheduling a year or more out with appointments not guaranteed. Insurance coverage can be challenging with some of the most sought after private practices eschewing insurance in favor of direct pay, which can easily run into the thousands for a multi-session autism evaluation.

Once a diagnosis is confirmed, families of children with autism often face additional challenges convincing Child Study Teams in public school districts to accept independent evaluations. This can lead to lengthy and expensive Due Process hearings or protracted negotiations that necessitate hiring a School Advocate who knows the law. Due Process hearings are formal legal proceedings where parents and schools present evidence to an administrative law judge who makes a decision about the educational placement of a child with a disability.

2E or Twice Exceptional children, who have autism, but are academically gifted, face additional challenges first in diagnostics that can favor non-verbal children and again in receiving differentiated instruction relative to their intellectual abilities while also receiving modifications for differences in behavior or sensory sensitives. In 2020, Governor Murphy enacted legislation which in part benefits 2E children by requiring that schools evaluate every student as potentially gifted, starting in Kindergarten. Contrary to expectations, the number of autism diagnoses for children without intellectual impairment in New Jersey has risen sharply in recent years, making the requirement to test for giftedness an essential expansion of the protections against prejudice for autistic children. Historically, educators have not expected autistic children to be academically gifted, but this belief has turned out to be false.

In Cedar Grove, an autism advocacy group called REALISE is working to educate the public and provide parents of autistic children with the support and resources they need. The Puzzle for Autism Tournament is a community event organized in partnership with the Cedar Grove School District and the Cedar Grove Artists Alliance. The event, which will take place on April 29th at Cedar Grove High School Gym, aims to raise funds for a local autism advocacy group. The tournament is a fun and unique event where teams of 2 or 4 compete to see who can complete the same 500-piece jigsaw puzzle the fastest. There will also be other fun family activities such as DIY puzzle, blue hair extensions, and Jigsaw Jam. In addition, information about autism and resources for families impacted by autism will be available.

The Puzzle for Autism Tournament is an excellent opportunity for individuals and families impacted by autism to come together, have fun, and raise funds for a local advocacy group. There are several ways that people can support the event, including registering to compete, spreading the word, getting sponsorship from businesses or individuals, and volunteering to help at the event. Interested parties can email [email protected] or visit https://bit.ly/puzzletournament23

In New Jersey, where there is simultaneously so much hope and so much difficulty for special needs families, groups like REALISE have arisen to fill the gaps in the system. Through these peer support groups, parents and caretakes are finding support, resources, and advocacy. Families meet for coffee and to compare notes about what therapists are most knowledgeable, what parks are accessible, which restaurants and quietest, and even which school districts are quick to provide services and which are less approachable. Legislation like the requirement to test for giftedness is helping, but the process is slow and enforcement can be lax. Support groups like REALISE form an essential part of the network of resources that New Jersey’s special needs families rely on each year.

*A recent study from Rutgers explored causes for increases in the rate of autism between 2000 and 2016. As of this writing, it’s still up for debate what those finding imply, but some experts believe it to be a true increase not attributable to improved diagnostics.