Sibling Connection Session

“Autism New Jersey has the connections and expertise to effectively initiate and respond to proposed policies that increase access to science-based intervention. Their analysis, consensus building, and strategic recommendations are exactly what our community needs.”

“Autism New Jersey understands the priorities of those they serve and can bring about real change that transforms lives. I’m proud to be associated with this organization and the tremendous work they do.”

“Autism New Jersey knows how to get things done in Trenton. They have the passion and expertise to evaluate and change policies that improve the lives of children and adults with autism throughout the state. I am proud to partner with them.”

“As a former Board Member and the mother of an adult son with autism, I know firsthand Autism New Jersey’s extraordinary level of expertise and dedication as well as their positive impact on our families. With this bold new initiative, we can all count on Autism New Jersey to continue to lead the way to better lives and brighter futures for our sons and daughters.”

“As a parent in a household of four with 2 children with autism, one aged 7 and one aged 3, it was a great burden lifted to know that I was able to attend the conference with the generous scholarship, otherwise I would not have been able to afford to go.”

“Our family struggles with many challenges including financial challenges, and this scholarship allowed for me to be able to attend this conference for the first time ever and to gain valuable knowledge in order to better help as well as better understand my own children.”

“As a parent of an autistic child, we seek new ideas and innovative ways to get through each and every day with our children, and some of the lectures at the conference were priceless for me to gain just that. If not for the scholarship, I would not have been able to attend or to be able to learn as I did. I am ever grateful for this and for your organization as a whole.”

“The process of getting my two 19-year-old sons their vaccine was perfect and so organized! Everyone there made our sons feel very much at ease.”

“Everyone I spoke to couldn’t have been more courteous, helpful and caring. This is a wonderful display of compassion for our special needs population — and their parents!  Thank you.”

“I can’t thank you enough for making Collin’s vaccine so smooth. I was met by someone who personally escorted me to a safe tent. The nurse spoke to him with such respect.”

“The staff and personnel were extremely helpful and made my son feel comfortable and calm. This is a lifesaver for our family.”

“They went out of their way to accommodate my daughter, including bringing the vaccine to her when she was too afraid to walk across the floor to the tent. Thank you.”

“I felt like I had to educate the doctors regarding my son’s autism.”

“(The doctor’s) demeanor and language and tone were far too hyped up, full of jargon and this made my daughter terrified and uncooperative.”

“It just seems like ...[many providers] are not trained in how to make accommodations for special needs children. I know there are things they could do.”

“The waiting rooms are crowded and I cannot filter out the background of people talking or shuffling magazines.”

“I went in there and there was like, several people trying to restrain him. They had him in restraints and my wife was in tears.”

“Like when they ask if pain is shooting or stabbing or burning, it’s like, I don’t know, it just feels funny.”

“I have gotten the distinct impression that all of the physicians I have seen have had no clue what autism means or entails or how that should change how they treat me.”

“I feel disoriented by being led down long hallways to different rooms.”

I’m autistic and a BCBA. It seems each year there is a greater emphasis on human rights, liberties, experiences, autonomy, and equality for spectrum individuals.

The presenter truly made me think about the importance of a strong connection with the families I work with and making sure they know that I understand their concerns. A true eye-opener!

I love the variety and depth of the talks at the conference. This is the best conference I have ever attended.

I was introduced to programs available for my child to get the assistance we need. I never would have known if I hadn’t attended the conference.

The opportunity for us to join Autism New Jersey’s Healthcare Consortium is one that we are very excited for and take very seriously. We are committed to promoting health equity and improving the patient experience for all ASD/IDD patients in our community and across the state. This experienced and skilled interdisciplinary group has the ability to make an impact and propel positive change.

Jillian Curnew, MSN, RN-BC
Lead Clinical Educator, Cooper University Hospital

It is an honor to be involved, and I am excited by and welcome the opportunity to collaborate with the other participants.

Jill Harris, Ph.D.
Autism Advancement Ambassador, Children’s Specialized Hospital

Bringing organizations together through this consortium is certain to encourage the sharing of innovative ideas and initiatives. We appreciate that the team at Autism New Jersey is always at the forefront of bringing people together to achieve best outcomes for individuals with autism and our statewide community.

Sandra Lewis, MSS, MLSP
Vice President of Marketing and Communications, NeurAbilities

but are clearly frustrated by nonverbal and severely intellectually disabled individuals who cannot relate to what they are experiencing.

So the outcome has been a failure to diagnose serious conditions (life-threatening conditions) as physicians “dismiss” caregiver concerns and fail to order needed testing.

and don’t know how to respond with respect for my dignity. I use AAC voice output, and [there was a] new person every time. Also, the nurses were always asking my mom, or they were not reading my chart, so they didn’t know I use AAC. I was not okay in general practice until I got a doctor who specializes in geriatrics, so she was knowledgeable about communication disorders. Also, pediatric urologists didn’t listen to my medical history from my mom, and they kept missing my problem.

The psychiatrist who was a friend helped me without getting paid.

from her being held down for bloodwork draws and being taken to the emergency room due to a problem behavior when all it did was reinforce the attention she was seeking (she was not injured, it was just their protocol).

The worst was dealing with her cancer care….Nurses, doctors, and aides were not able to follow the recommendations of the psychological team. She had problem behaviors as a result….I couldn’t figure out how to get around the multiple systems coordinating and communication re: services. …. People never learned how she communicates and didn’t use her communication device.

I could go on.

I was able to connect with resources for my son as well as my entire family. I’m feeling more hopeful now than I have in a long time!

Our team was so excited to attend and can’t stop talking about all the activity, the great information, and the sense of community they felt at this event.

The conference helped generate ideas on how to best support my students and gave me ideas on how to better collaborate with parents.

I always enjoy the opportunity to connect with colleagues in the field and connect with old friends.  The conference provides a platform for learning, networking, and the feeling of connection.

I have been an attorney for over 40 years, and this was one of the best presentations I ever attended. The speakers were terrific, and the program was informative. Above all, the entire afternoon was a moving experience.

Job well done. I just wish the room was packed with more officers. I plan on introducing this to my County Chiefs Association.

Thank you very much for inviting us to this presentation. I would definitely recommend possibly hosting in various counties throughout the state.

Suzanne Buchanan, Psy.D., BCBA-D
sbuchanan@autismnj.org

Dr. Suzanne Buchanan is the Executive Director of Autism New Jersey, a licensed psychologist, and Board Certified Behavior Analyst – Doctoral (BCBA-D). She currently serves as the Chair of the New Jersey Board of Applied Behavior Analyst Examiners, a state body that regulates the profession of behavior analysis. She earned a doctorate in clinical psychology from Long Island University and has worked in the autism field for more than twenty-five years. 

Joe Novak, Ed.D., BCBA-D, LBA, CCC-SLP
jnovak@autismnj.org

Joe has spent his nearly twenty-year career using the principles of Applied Behavior Analysis (ABA) and speech-language pathology to improve the lives of individuals with autism in a variety of positions and settings. He started his career as an instructional aide in a school setting and later worked as a speech-language pathologist (SLP) in private and public-school settings. 

Amy Golden, M.S., BCBA, LBA, NBC-HWC
agolden@autismnj.org

Amy Golden is a Board Certified Behavior Analyst and Certified Health & Well-Being Coach. She has more than 25 years of experience working with individuals with autism and other developmental and behavioral disorders in homes, public schools, center-based services, private practice, and as the director of an intensive social skills program. Amy has provided extensive training to parents and professionals with an emphasis on collaboration in all of her work. 

We envision a future where individuals with autism are embraced and supported in healthcare interactions and settings.

Supporting Your Young Child’s Skill Development

Explore ways to strengthen skills while waiting for diagnostic clarity and treatment to begin.

Managing Severe Challenging Behavior in the Home

Children and adults who routinely engage in severe challenging behavior typically require treatment and care from a team of professionals and trained caregivers. Proactive strategies to consider.

Julian is a 14-year-old diagnosed with autism who is being admitted to the hospital for routine surgery to repair a damaged eardrum. While reviewing his medical history in preparation, a nurse practitioner finds a note in his medical record that he’d been sedated for the assessment of his eardrum, and that the damage is likely from several undiagnosed and untreated ear infections.

The nurse brings this up at a unit meeting, and it was decided that he should reach out to the patient’s parents prior to surgery to gather more information.

In talking to the patient’s mother, the nurse learns that Julian very rarely goes to the doctor because he exhibits severe aggression and property destruction; in fact, his mother said that his pediatrician has mentioned that he may not be able to keep him as a patient much longer if this continues.

The nurse is now very concerned about how they will keep Julian safe in the hospital and mentions to his mother that he may need to be restrained and medicated post-surgery to maintain safety. Julian’s mother is adamant that can’t happen, but the nurse writes it into his chart anyway because he simply doesn’t know what other options they will have.

This medical procedure and hospitalization have the potential to be traumatic for everyone involved. Julian must undergo surgery that may have been avoidable. He will have to leave the comfort of his daily routine for a hospital stay with unknown people and confusing expectations.

His parents will be distressed by seeing their son in pain. They may also have to see their son put into restraints and perhaps be quite upset at the hospital staff who order that. Finally, his medical team will feel overwhelmed and may end up injured if Julian aggresses toward them.

Jon Gottlieb, Esq.
jgottlieb@autismnj.org

Before joining Autism New Jersey, Jon built a private law practice dedicated to helping parents of special needs children litigate their special education claims. Jon now heads the organization’s Information Services Department, helping families of individuals with autism navigate the complex – and sometimes confusing – world of autism intervention services. His background in the law and his familiarity with the needs of the autism community enables him to explain sophisticated legal concepts in easy-to-understand ways. Read more>>

I am honored to be able to represent the New Jersey State Police on the Autism New Jersey Law Enforcement Advisory Committee as we endeavor together to build a stronger partnership between law enforcement and the members of the autism community.

It is my belief that effective training and community outreach should serve as a catalyst for establishing a prolonged trust and safe future interactions between individuals with autism and police officers. I look forward to playing even a small role in ensuring that our autism community feels safe and secure when interacting with law enforcement and our law enforcement officers feel knowledgeable and supported in protecting the autism community.

It’s an honor to work with Autism New Jersey and the Law Enforcement Advisory Committee.  It is important for professionals to come together and exchange thoughts and ideas about best practices. By doing so we can better serve the needs of our autistic community.  We can create safer interactions with more positive outcomes.

Partnering with Autism New Jersey to foster and create positive interactions between the law enforcement and autistic community is of great importance to the Essex County Sheriff’s Office. Working together we can strategize and better train our officers in communicating and interacting with the autistic community and their families.

As a father and husband that lives the life of a person with a son that has autism and being a chief of police it’s my responsibility to be part of the acceptance change in our society. It’s a blessing and honor to work with Autism New Jersey and many police officers from around the state to be part of the change. I look forward to seeing the success we develop as law enforcement for the special needs community.

I commend the efforts of Autism New Jersey to produce and execute a Law Enforcement Initiative.  Officers throughout the state have an increasing amount of encounters with autistic individuals.  Meeting with other officers is a great way to fine-tune our methods and obtain ideas that will help bring all encounters to a safe conclusion. I’m so proud to be on the Law Enforcement Advisory Committee.  Many parents of individuals with autism work tirelessly to provide a safe environment for their children.  Nothing is more satisfying than being a comfort to families when a need arises.

The Law Enforcement Initiative is a wonderful endeavor that will undoubtedly benefit members of the autism community, as well as the law enforcement community. The awareness and understanding of people with autism is extremely important for members of law enforcement. Every police department needs to have the proper training and established practices to keep everyone safe.”

I am extremely proud to have been welcomed as a member of the Law Enforcement Advisory Committee.  Not only am I a veteran police officer, I am also the father of an autistic son.  It is very meaningful to me to have the opportunity to potentially help with a program that will ultimately benefit him.

“As a parent of an adult with autism, we’ve worked with many behavior analysts over the last twenty years and had a range of experiences.

Licensure gives me some peace of mind that those practicing ABA have met minimum standards and that, should the need arise, the Division of Consumer Affairs will be involved to protect individuals with autism.”

 
As a practicing behavior analyst who welcomes licensure for our profession, I’m excited to apply for licensure.

The state recognition for behavior analysis as a bona fide healthcare profession is important for both behavior analysts and consumers and helps move us closer to our common goal of ensuring safe and effective treatment practices for the autism community.

 
Since our founding almost 60 years ago, Autism New Jersey has successfully advocated for public policies that increase access to qualified and competent treatment providers and ensure individuals’ and families’ rights.

The Applied Behavior Analyst Licensing Act is an exemplary demonstration of our advocacy at the nexus of state policy, quality treatment, and consumer rights.

We welcome this new era of increased transparency on qualifications and accountability for practice standards that will benefit individuals with autism.

As a parent of a 7 year-old boy with autism I understand the need for this legislation

It is so important that we can trust those who are charged with our child’s development in their ABA programming journey.

Working in law enforcement, I can tell you that background checks make a difference in removing those without the moral fiber needed to be responsible for the well-being of others.” S2311/A1128 will give caregivers greater peace of mind as many individuals with autism have limited verbal abilities, which likely would make it hard for them to report abuse or negligence.

We are so grateful.

After years of fear and avoidance, our daughter now understands and is compliant during medical visits. Visual schedules, generalization, and desensitizing strategies have been game-changers for her. She is proud of herself, and so are we!

My son used to be terrified of medical procedures.

Even with social stories, the presence of medical staff would trigger his fight-or-flight response. But with consistent practice at EPIC, he has become confident and cooperative. Now, he sits calmly for blood draws, asks for the tourniquet, and no longer needs to be restrained. The transformation has been incredible, and we owe it all to the work done at EPIC and the support from Autism New Jersey’s Medical Equipment Lending Library.

The medical equipment provided by Autism New Jersey has been phenomenal.

We’ve used the phlebotomy chair, cart, and light to simulate real medical procedures for our students. This hands-on practice has desensitized them to these experiences and prepared them for real-life situations. The success rate of generalization has been 100%, with students independently requesting simulations and tolerating various medical procedures.

It is beyond rewarding to assist families in achieving positive experiences in the medical community.

REED Academy in Franklin Lakes has enhanced its Life Skills room with a dentist chair borrowed from our Medical Equipment Lending Library.

This specialized equipment allows students to acclimate to the sights, sounds, and sensations of a dental visit in a safe, controlled environment. By simulating real-world experiences, the chair plays a vital role in building students’ confidence and reducing anxiety, making their future dental appointments more comfortable and less intimidating.

The conversation on autism in the African American community was awesome and I would love to attend more workshops around this discussion.

The conference presents a substantial amount of valuable information that can benefit all attendees. The vendors showcase a variety of high-quality resources, ranging from educational materials to innovative tools designed to support families and professionals alike.

I am both a parent of an autistic individual and practitioner. I’m not in NJ – and I enjoy going to your conference because of the interprofessional collaboration that the conference embodies, as well as the increased focus on compassionate care.

As a longtime attendee, this conference has helped me understand various resources available for my autistic son and provide insights on how to collaborate with service providers, CST members and what proactive steps I can take in financial planning.

Great to see so many sessions geared towards adults. I loved the evolution of ABA sessions with giants in the field like Dr. Bridget Taylor! Also enjoyed learning about trauma and ACT and how medical issues are being recognized for underlying disruptive behaviors. Great job!

The topic of “Law Enforcement Connections” was great and I’ve talked to numerous parents on the subject and how important it is to make that connection with the local law enforcement agencies and individuals with IDD.

I thought the presenters were great! Having the presenters speak about their personal experiences really brought the issues home. The various programs discussed were presented in such a way that made their value to the community very evident.

I find the collaboration between different law enforcement agencies as well as parents and vendors invaluable. This kind of cross-disciplinary collaboration helps law enforcement stay updated and apply the most effective approaches in their work. Having been involved with the Special Needs Registry for almost 10 years – I still walk away with new ideas on how to make to it better and incorporate what other agencies are doing into our existing program.

I thought the manner in which each panel member presented provided an excellent flow and chronology to disseminating this very crucial information.

Jenna Glennon, MAT, BCBA
jglennon@autismnj.org

Jenna Glennon is a Board Certified Behavior Analyst with more than 25 years of experience working with individuals with autism and other developmental and behavioral disorders in a variety of settings. Jenna started her career teaching students with autism in the public school setting. She was also previously the Coordinator of Professional Services at COSAC (now Autism New Jersey) and, for the last 23 years, a consultant in private practice. In this role, Jenna works in collaboration with the New Jersey Department of Health’s Special Child Health Services to provide enhanced case management with a focus on autism and emerging challenging behavior.

Mock pullovers taught me the basics of how to handle actual police stops. It was good for me to learn the importance of keeping both hands on the wheel and also really helpful to have all my driving documents in one place.

One time I did get pulled over, and I used everything I learned. Thankfully the police officer was really good, and it showed me how being able to know what is expected helps to make a big difference for how you react to an actual police stop. Mock traffic programs are one of the best things you can do because they help you know what to expect during a traffic stop.

Andrew Arboe, Autistic self-advocate

By providing officers with readily available information about individuals with disabilities and special health needs, registries ensure that law enforcement officers are equipped to respond with empathy and understanding, de-escalate potentially volatile situations, and provide respectful and effective assistance.

William A. Daniel, Union County Prosecutor

When he eloped for the first time a couple of summers ago, my heart stopped. I’ve never been more terrified. I immediately contacted our local police department and county sheriff’s office, where I updated my son’s information on their autism and vulnerable persons registry and requested a free tracking device. I appreciate the security and peace of mind that tracking devices provide. As a mom, you hope you never have to use them, but knowing they’re available when I need them helps me breathe a little easier.

Amy Pini, Parent of a child with autism

Kellie is the older sibling of a young man who has Autism. Kellie and her brother are very close and he has inspired her academic and professional career paths. She graduated with two Masters degrees from the Edward J. Bloustein School of Planning and Public Policy, creating her own concentrations in Disability Policy, Inclusive Design, and Accessibly Planning. She currently works as the Quality Assurance and Compliance Specialist for Bergen County Special Services Adult Day Programs.

Matt Pini is a Freshman in High School with a twelve-year-old brother with autism. Matt has been an ambassador for Autism New Jersey and an advocate with individuals since the second grade.

Aleta Murphy is a Neuroscience PhD Candidate at the Icahn School of Medicine at Mount Sinai, where she is studying autism genetics. She is the older sister of Patrick, 26, who is on the spectrum.

Hillary Freeman is a tireless advocate for individuals with disabilities and their families. As the sister of a man with autism, Ms. Freeman brings a deeply personal connection to her work, combining her personal experience with her extensive legal expertise to champion the rights and needs of those with disabilities.

Ms. Freeman is a nationally recognized authority on special education law, guardianship, estate planning, and adult services, with a particular focus on the Individuals with Disabilities Education Improvement Act (IDEIA) and Section 504 of the Rehabilitation Act.

She has dedicated her career to ensuring that individuals with disabilities receive the services and supports they need to thrive.

Hassana Arbubakrr is a passionate advocate for youth empowerment, criminal justice reform, and societal change, with a focus on creating inclusive communities and supporting marginalized groups. She holds a degree in Criminology, double minor in Psychology and Business Management from Howard University and works to further her mother’s mission through Nassan’s Place, a non-profit dedicated to helping children and families affected by autism.

 
Hi! We’re the Pini family.

Throughout April, you will be hearing from each member of our family about our journey with autism, one that begins with our youngest son, Tommy.

Every morning and every night, I count my blessings. One of my greatest blessings is being “Bamps” to six incredible grandsons, the youngest of whom is Tommy, my namesake. Tommy, now twelve (almost thirteen), has profound autism.

Raising a child with profound autism has taught us to cherish every milestone, big or small.

Tommy is our youngest of three boys. His joy, whether swinging at the playground, splashing in the pool, or visiting farm animals, is our joy. But parenting a child with autism also brings unique challenges, from managing medical and dental care to ensuring his safety.

Since Tommy’s diagnosis, we have had to adapt to his behavior and learn the best ways to help and advocate for him. But despite these struggles, Tommy has a heart full of joy, a love for Sesame Street, and a laugh that makes all the tough moments worth it.

Growing Up With Tommy

Through every challenge and triumph, Tommy’s family has stood by his side, learning, adapting, and celebrating his progress. Autism New Jersey has helped them foster understanding, build connections, and find the resources they need to support and embrace his journey.

Jackie Kelly’s efforts raised a combined total of $21,801!

• The 4th Annual Shillelagh Plunge for Autism, hosted by the Foundation of the Friendly Sons of the Shillelagh in Belmar, brought in $12,500.
• The Puzzle Piece Fundraiser, hosted by Patrick’s Grille in Neptune, added another $9,301.

Angie Tener’s 17th Annual Bake Sale Raises Over $4,000 for Autism Awareness

Angie Tener’s 17th Annual Autism Awareness Bake Sale, Shirt Sale & Sale of Student-Made Items in partnership with the Children’s Center of Monmouth County in Neptune continues to inspire.

Bob Gebroe and Livingston Community Rally for Autism Awareness

Bob Gebroe and the rest of the The Livingston Advisory Committee for Disabilities in conjunction with the Livingston school district hosted a Shine The Light On Autism event that brought in nearly $3,550, helping to support vital programs and statewide awareness.

Crystal Valerie Inspires Change with Student-Led Autism Awareness Walk

Crystal Valerie at the Wanaque Board of Education in Haskell made a meaningful impact with their Peer Leaders Autism Walk, raising an impressive $3,545. Through collaboration, leadership, and community spirit, Crystal and her students showed how school-based efforts can drive awareness and support.

Autism New Jersey: The First Decade 1965-1975

Passionate parents band together, form support group

A group of parents were growing more and more concerned. Studies from 1965 indicated that about two to four in 10,000 children had autism, leading to the impression that the disorder was extremely rare.

These parents struggled to keep their children with developmental disabilities safe, access therapy, and find appropriate schooling. Their passion laid the foundation for what would eventually become Autism New Jersey. Read more>>

Read about our first decade

Autism New Jersey: The Second Decade 1975-1985

From Institutions to Inclusion: How New Jersey Parents and Advocates Reshaped the System.

The 1970s and 1980s were banner years for the autism community. Autism was finally listed in the DSM; advocates helped individuals with learning disabilities move from institutions and group homes; and from a tiny office in Princeton, New Jersey, Nancy Richardson was making history. Read more>>

Read part two of our history series

Autism New Jersey: The Third Decade 1985-1995

From ‘Rain Man’ to Real Change: How Advocates Transformed NJ’s Autism Landscape

For decades, parent groups like Autism New Jersey’s predecessor, COSAC, had been working to gain awareness for their children’s developmental disorders and funding for needed treatment and support. But almost overnight, the movie “Rain Man” brought the term “autism” into public consciousness. Read more>>

Read part three of our history series

Darren Blough, MSW, BCaBA, LaBA
dblough@autismnj.org

Darren Blough is a Licensed Assistant Behavior Analyst, who possesses more than 25 years of leadership experience working with children and adults with disabilities. He earned his master’s degree in social work from Rutgers University. Darren is a past President of the Board for the New Jersey Association of Community Providers and served as the Co-Chair of the Legislative and Policy Committee for the organization. He also serves as the Chair of the Adult Services Workgroup for the New Jersey Association for Behavior Analysis and served on the Board for the Non-Profit Development Center of Southern New Jersey, most recently as the Board Chair. He also was appointed by Governor Murphy as an inaugural member of the State Board of Applied Behavior Analyst Examiners, where he served for three years.

Devin Baker, MPA
dbaker@autismnj.org

Devin Baker is the Deputy Public Policy Director for Autism New Jersey, who earned his master’s degree in public administration from Rutgers University. He has a decade of experience working in the public sector and policy realm on a municipal, county, and state level in New Jersey. Devin previously served as the Chief of Staff and Legislative Director to Assemblywoman Tennille R. McCoy and former Assemblywoman Valerie Vainieri Huttle. In these roles he collaborated with interest groups, government entities, and other elected officials to craft significant and responsive legislation pertaining to topics such as health, human services, housing, and the environment. Devin also worked for the New Jersey Department of Children and Families as the Legislative Liaison where he was instrumental in shaping policies within the state’s behavioral health and child welfare systems.