Special Needs Registries to Inform First Responders

By: Cassie Hauschildt

When a child is diagnosed with autism, there are a number of resources, therapies, and programs recommended  to parents. They are told all about ABA, ST, OT, PT, and FT, among others, receiving an alphabet soup of therapies. We explain the importance of early intervention. For parents of older children or teens, they learn how to navigate the school system with BIPs, IEPs, ARDs, and more. They begin to understand the behaviors of their children in a new light, and may even gain a few new fears from behaviors of other children. They learn the proper term for eloping and steps to take to help prevent sensory overload. And while many behaviors are explained, it also becomes obvious that there is not an immediate fix for many of them.

One service that professionals may not tell parents  about at the time of diagnosis is their local police department’s registry program for individuals on the Autism Spectrum (along with other disorders or special needs). However, if this is a service is available to them, it could help alleviate many of the concerns that come along with an autism diagnosis. This free and essential service is often not openly advertised to the public, but rather, lives on a corner of their local webpage. Some don’t even have an obvious link on the homepage, requiring citizens to use the search function in order to get their child included on the list. This service can have a variety of names, including but not limited to: “Safe Return Program,” “[Autism and] Special Needs Registry,” “C.A.R.E.S,” and “Voluntary Registry Program for Vulnerable Populations.”

Registering your ASD Child for this program will create a note associated with your home address in the local police’s internal system. This can help participants in multiple ways. First, if there is ever an officer dispatched to your home, they will be alerted that an ASD individual lives in the home and be prepared to accommodate that person’s needs. Additionally, if a child was to elope, many programs have the option to upload a recent photo. This will make it easier for law enforcement to distribute the child’s picture quickly. For some cities, , this information could also be shared with the any firefighters or paramedics sent to the home by the dispatch team.

The method for finding if your local police department offers this program will differ depending on your city. The best start is to try searching “[CITY NAME] Special Needs Registry” on a search engine such as Google. If this doesn’t work, you may have to do some detective work on the local police website. When trying to find this program locally, I had to find the “Community Programs” tab on the menu bar of the police website.

Each program will require different information to register. At a base, caregivers should expect to provide name, address, diagnosis, and physical description of the registrant as well as the contact information for all caregivers. If the registrant is able to drive, information about their primary vehicle will also be required. Any additional required information will vary depending on the local program. Some require a doctor’s letter proving diagnosis, others ask for a recent picture, and other ask for communication methods and support items.

If you find that your local police department doesn’t have a program, consider approaching them about implementing one. With the updated CDC estimate of 1 in 44 children getting diagnosed with autism, it is almost guaranteed that this program will be useful to more than just you. Additionally, these programs can be utilized for individuals with Alzheimer’s, Dementia, Down Syndrome, and many other special needs. BCBAs and Educators are the perfect individuals to partner with  police on  program parameters. Additionally, it’s a great opportunity to broach your local police department  about training for interacting with ASD individuals.

Cassie Hauschildt received her autism diagnosis at 32 years of age and is the mother of an ASD son, who was diagnosed at 20 months old. Since his diagnosis, she has become an advocate for ASD children. She dedicates her time to mentoring parents of ASD kids through the tough first few months post-diagnosis. She also is trying to get rid of the negativity surrounding ABA therapy. She does this through humor, while using real talk, on her TikTok @AnotherAutismMom. She also runs the “Dino and Nuggets Corner” Facebook Group.

Raising Expectations for the Treatment of Children With ASD

On November 6th 2021 in NYC, Dr. Ronald Leaf will describe the Autism Partnership Method (APM) in a free seminar at St Monica’s Church from 2-4pm. Free CEUs will be available! 

Children with Autism Spectrum Disorder (ASD) have amazing potential that can and should result in a high quality of life. However, this is highly dependent on the treatment received. Unfortunately, the current standard of care—Conventional Applied Behavior Analysis (ABA)—is quite rigid and formulaic in its approach, yielding treatment that is not tailored to the unique needs of the children and their families. Typically, treatment only addresses limited areas such as behavior and communication deficits. Although children may receive some benefits from Conventional, protocol-based ABA, the results usually do not endure over time, nor do they translate to more natural settings that are essential for self-sufficient adulthood.

Autism Partnership Method is an extremely individualized approach to ASD that yields lifelong benefits.  Rather than follow a “one size fits all” treatment recipe. Progressive ABA training is not time based, but performance based — no less rigorous or precise than the training regimens of surgeons or civil engineers. Quality treatment focuses on the entire child, thereby addressing the child’s foundational behaviors, including communication, socialization, play, and independent living skills — as opposed to addressing a more limited set of behavioral or communication needs. Progressive ABA treatment is designed so that children can succeed in mainstream settings, such as regular education classes, and can thrive in extracurricular activities. Children who receive progressive treatment, have been shown to make the progress their parents dream of, such as playing with their sibling and developing meaningful friendships.

In 2011, the journal Education and Treatment of Children published A Program Description of a Community-Based Intensive Behavioral Intervention for Individuals with Autism Spectrum Disorder. This study evaluated the progress of 64 children at Autism Partnership agencies in Seal Beach, California; Hong Kong; Leeds, United Kingdom; and Melbourne, Australia. The results found that 70.3% of children achieved best outcomes when individualized ABA services were provided early (i.e., before the age of 9), and intensively (i.e., 10–40 hours a week), by quality therapists.

At Autism Partnership we are deeply concerned about the expectations regarding the outcomes for children diagnosed with ASD!  Simply put, we feel that the expectations are too low. Children with ASD have a far more favorable prognosis than believed achievable decades ago, yet there still seems to be a lack of understanding regarding children’s’ actual potential. Children with ASD have amazing potential! The majority of children can become conversational, achieve success in school, develop meaningful friendships and most importantly, experience a high quality of life!  However, achieving this requires high quality intervention with highly trained staff. 

Register for the Autism Partnership seminar here! 

About The Author

Ronald Leaf, Ph.D. is a licensed psychologist who began his career working with Ivar Lovaas in 1973 while receiving his undergraduate degree at UCLA.  Subsequently he received his doctorate under the direction of Dr. Lovaas.  During his years at UCLA he served as Clinic Supervisor, Research Psychologist, Interim Director of the Autism Project and Lecturer.  He was extensively involved in several research investigations, contributed to the Me Book and is a co-author of the Me Book Videotapes, a series of instructional tapes for teaching autistic children.  Dr. Leaf has consulted to families, schools, day programs and residential facilities on a national and international basis.  Ron is a Director of Autism Partnership.  Dr. Leaf has published extensively in research journals.  Dr. Leaf is the co-author of: A Work in ProgressTime for SchoolIt Has to Be Said!Crafting ConnectionsA Work in Progress Companion Series and Clinical Judgement.

Seaver Autism & YAI Family Peer Advocate Study

The Seaver Autism Center for Research and Treatment at the Mount Sinai School of Medicine is conducting a research study that uses Family Peer Advocates to help improve the health and well-being of children with autism. YAI and Premier HealthCare have also partnered up with the research center to provide participants in the study a comprehensive diagnostic assessment. YAI provides one of the nation’s most comprehensive networks of programs and services to assist people with disabilities in maximizing their potential.

 

Family Peer Advocates of this initiative will provide peer support and education related to autism, act as liaisons between families and health care providers, as well as assist families in navigating a complex system of services. Eligible participants include parents of children who have been diagnosed with autism, individuals of African-American or Latino descent, and those who reside in the Bronx or Manhattan. Participation is entirely voluntary and free. Eligible participants will be asked to completed a series of questionnaires over the course of six months, and also reimbursed for travel expenses.

The Seaver Autism Center leads progressive research studies while providing comprehensive, personalized care to children and adults with autism spectrum conditions. For more information about the YAI Family Peer Advocate Study, visit the Seaver Autism Center’s Current Studies or call (212) 241-0961.

Horse Program helps both Children and Adults with Disabilities

A new therapy program called Hoof Prints in the Sand services individuals with special needs ranging from ages 5 to 63. This animal based therapy program is aimed at using interactions with horses to help individuals gain not only physical skills like muscle definition, correct posture and hand-eye coordination but also much-needed confidence.

Founded by a special education teacher with an equestrian background the entire Hoof Prints in the Sand  program consists of volunteers who dedicate their time to work one on one with students of varying disabilities and ages. Students begin by testing out a mechanical horse appropriately named “Hope” and then easing into riding lessons on donated horses.  The volunteer coaches help students by riding with them, leading the horses, or walking beside the horse and rider to ensure safety.

Do you know of a unique program for individuals with special needs in your area?

Special Needs Summer Camps

Summer time can be full of excitement for children. Time away from school, vacationing, family events, and of course, summer camp!

For parents of children with special needs it can be a challenge finding a local camp that is able to support yours child’s specific needs. There are a variety of options available for campers with special needs ranging from day camps to overnight camps.  Some programs are need specific while others camps are able to offer a more inclusive setting.

Summer camps can be beneficial for children in various ways. Camps offer environments where children can learn social skills, verbal skills, work on everyday independent tasks, learn new hobbies such as biking, swimming, art, musical instruments and more. While at camp children make important bonds and connections with camp staff as well as other campers. All of these activities and new bonds help campers gain independence, build confidence and raise self-esteem.

Summers camps aren’t only beneficial to the children participating in them. Camps are also a great opportunity for parents to meet, greet and network with each other to share resource information.

To help find a summer camp that meets your child’s special needs try this site:

Special Needs Summer Camps

Interested in reading about some unique summer camps? Check out these additional sites

Social Skills Camp

Bicycle Camp for Speical Needs

Goulds Camp

Know of a great summer camp?  Let us and other parents know!

Interview with Lisa Carling, Director of the Theatre Development Fund’s Accessibility Programs

Lisa Carling is the Director of the Theatre Development Fund’s Accessibility Programs in New York City. Recently, she sat down to speak with BCBA Sam Blanco about their Autism Theatre Initiative. TDF’s next autism-friendly performance will be The Lion King on Sunday, September 27, 2015 at 1PM. The Lion King was the first autism-friendly performance TDF organized back in October 2011, and has been so popular that it is now an annual event each fall at the end of September. Read on for Lisa Carling’s inside scoop on the Autism Theatre Initiative!

SAM BLANCO: Tell me a little bit about how the Autism Theatre Initiative came about.

LISA CARLING: It came about because we had a very successful program for students in the District 75 schools who had hearing loss and vision loss. We would schedule Wednesday matinee performances of Broadway shows, and bring these kids with their teachers to see Broadway performances. We were hearing more and more from special ed teachers, “This is great, but what can you do for all the kids in the District 75 schools that are on the autism spectrum.” We didn’t know, because the more we talked to parents, educators, therapists, the more we realized that this population would probably benefit more from a designated performance, being able to come to a show and be themselves. It wouldn’t be fair to mix them with typical audiences that may not understand atypical behavior. We also realized from talking with parents that they’re very few opportunities for families to do something together if you have a child or adult on the spectrum, what can you do together with siblings, grandparents, aunts and uncles. So we wanted to create an opportunity for families to come to the theatre together and have a terrific time in a judgment-free, welcoming environment where the children or adults on the spectrum could just be themselves, and the parents and siblings would not have to explain a thing. Anything goes. No judgments.

SB: Do you feel that judgment-free aspect is what has really drawn people in?

LC: I do. We’re very careful with the material, what productions we choose. We go after what most families want to see, family-friendly productions, big musicals, easy storylines, colorful costumes, dancing and singing, what everyone loves. And then we will ask the production if they are able to make slight modifications in sound and lighting. We rely on specialists in the autism community who can come and take a look at a production and then say, here are maybe a dozen places where it would really be beneficial if the sound could be turned down a level, we usually say not above 90 decibels, or the lighting is just too intense. We always stress when we talk to a show that these are suggestions and if they can make them that would be great. If not, we will warn the parents ahead of time at point-of-purchase. And we always emphasize we want it to be the same great show, the same terrific Broadway musical that families all over the country want to see when they come to New York.

We tried something different in December by doing a play for the first time, The Curious Incident of the Dog in the NightTime. We were very leery of that. We didn’t know what it would be like for families to come and see a serious drama, albeit with very funny moments in it, about situations that they may live with 24/7. But it was an opportunity to stretch our expectations and to offer something newer to the autism community, to identify older people in the community, college-aged students on the spectrum, older adults.

SB: What was the response to that?

LC: It was unbelievable. It was very moving to all of us. The cast, every cast member, had tears in his eyes at the curtain call. And there was a very moving moment at the end of the play, where Christopher, after he’s told his teacher all the things he’s accomplished: he found his mother, he wrote a book, he solved the mystery of who murdered Wellington, and he says something to the effect, he asks her, “This means I can do anything, can’t I?” And he asks her three times, and that question just hangs there unanswered by the teacher. But for our autism-friendly performance, there was a teenager who shouted right back at him, “yes, you can!” And it was such an affirmation of the impact of that show on this audience.

There was a time when we would have shied away from offering a performance where there was strong language in it, or violence. There’s a scene where the father strikes his son. The show worked with us on that and it was choreographed in a different way. It was more suggestive and not as startling. But we did it. And we’re not afraid anymore to just put opportunities out there. Parents know their kids the best, and if they think their child or adult can’t handle something then they’ll let us know or they won’t buy tickets.

SB: Are you involved with other theatres who are putting on autism-friendly performances?

LC: This year’s National Autism Theatre Initiative advisory partnerships varied in scope from Stages St. Louis’s 235 seat Playhouse at Westport Plaza in Chesterfield, MO that offered a sensory-friendly performance of The Aristocats in June for groups of school children on the spectrum in the St. Louis area; to The Big Apple Circus in Brooklyn, NY which presented a total eight autism-friendly performances of Metamorphosis throughout the year in up to 1,700 seat tents in Manhattan and Queens, NY; Boston, MA; and Bridgewater, NJ. The impact on attendees with autism or with other developmental or cognitive disabilities was immeasurable. From a mother at Stages St. Louis, “My daughter is in this show. Until today, her younger brother had never seen her perform because he is autistic and needs to get up and walk around every now and then and can be loud when he’s excited. Today, he not only saw his sister perform but he felt he was in a safe space, and he gave her a standing ovation every time she walked on stage.”

SB: With the partnerships, what resources do you provide?

LC: Conference calls. We help them in the planning. We recommend give yourself first time six months to a year to plan for this. We show them examples of the social narrative, character guides, video of what it’s like to walk inside the theatre, various supports day-of, what works out the best for us in terms of the koosh balls and stress stars. Just essentially, share our play book, what worked well for us and we always emphasize adapting for your community. And that goes for what you call the performance as well. In New York, we use the term autism-friendly because our community wants that and because in the initial planning they wanted to own that word and raise the awareness. Other parts of the country might use the term sensory-friendly, in the U.K. they like relaxed performances. But it doesn’t matter. The thought process is the same, you’re welcoming people on the autism spectrum as well as individuals with other developmental or cognitive disabilities and making slight adjustments that make the experience more comfortable.

SB: What advice do you have for theaters or other organizations who want to create autism-friendly events?

LC: Jump in and do it. Don’t be afraid because you will learn every time you do it; you’re going to do it better. Opening up accessibility for people on the spectrum as well as for other individuals with cognitive and developmental disabilities is where the need is right now. All theaters get it about providing captioning and audio description, but they are neglecting a huge audience in their communities. So, make the effort. Reach out there, you will not regret it.

I would advise choosing the first production (or productions) that are going to be successful. Particularly the first one. Make sure it’s a positive experience because this is a new audience. So look for a show that would be engaging to all families. Please do a weekend matinee. Scheduling this on a weekday. About 90% of the people on our surveys say they want a Saturday or Sunday matinee. They cannot come during the week. Again, this is geared for families. If you’re working with school groups, that might be different. Oh, an advisory group. Three is a good number. Make sure you get some outside input, someone who’s looking at the production you’re considering with an autism eye. Because what an artistic director might think is a good choice is not necessarily what someone who works with people on the spectrum, or someone on the spectrum. Don’t discount the value of having someone on the spectrum as one of your advisors.

SB: Can you describe some of the feedback you have received from participants?

LC: The overwhelming feedback we’ve received again and again is how wonderful it is to be in a judgment-free environment, where parents and siblings can just relax. They don’t have to worry about explaining behavior, they don’t have to feel that they’re being stared at. One very telling comment came from a mother last April after our Disney Junior show, who said, “Here I am, sitting in a theater with 2,000 strangers, and yet I feel we’re all part of the same family.” She’s right. They all understand each other. So a child who’s stimming or needs to get up, is singing along, it’s wonderful. There’s no difference. It’s not bothering anyone.

SB: Are you always able to offer the tickets at 40-50% off or is that the goal?

LC: That’s the goal. We hit that most of the time. If you have a family of four that you want to bring to a Broadway show, and you’ve got parking involved and public transportation, it’s important to keep the cost low. And then you get into all the additional expenses parents have: medical expenses, schooling, one-on-one therapists.

SB: Can you tell me anything about future direction of ATI?

LC: We are interested in working with off-off Broadway companies and consultancies where we will help them provide autism-friendly performances during the summer which is a hard time for us to book an autism-friendly Broadway show so we have our summers to help smaller theaters that might be willing to open their shows to the community.

SB: Is there anything I left out?

LC: I want to cite National Theater America Office with Curious Incident. They recognized that they wanted to make the show as affordable to the autism community as possible, so they went out and sought funding to underwrite the cost. So all of our Curious Incident tickets we were able to sell for $25. Orchestra to balcony, $25 thanks to the National Theater’s funding to help underwrite the cost. I wish more producers thought in terms of providing these affordable opportunities. It’s in the nature of the commercial theater that it’s very expensive to do shows, but if occasional opportunities could come along like this, we could reach so many more people. I remember getting e-mails from parents who were saying, “This is the first time I’ve ever been able to sit in the orchestra.”

ABOUT LISA CARLING

Lisa CarlingLisa Carling is Director of TDF Accessibility Programs (TAP) at Theatre Development Fund where she runs a department of services for people with physical disabilities as well as individuals on the autism spectrum or with other developmental or cognitive disabilities. She has spoken on accessibility panels for the Broadway League Education Forums, Association of Performing Arts Presenters, Americans for the Arts and the Kennedy Center’s Leadership Exchange in Arts and Disabilities (LEAD) conferences. Lisa received a “Distinguished Leadership in Hearing Accommodation Award” from the Hearing Loss Association of America New York City Chapter in 2015 and a “Community Hero Award” from Best Buddies New York in 2014. TDF has won seven accessibility awards honoring her department achievements, including the “Excellence in Accessibility Leadership Award” at the 2006 LEAD conference. Her credits include: launching the “Autism Theatre Initiative” (2011) which makes theatre accessible to children and adults on the spectrum and their families; designing TDF’s “National Open Captioning Initiative” (2004) that partners with regional theatres across the country to expand audiences of people with hearing loss; and establishing TDF’s open captioning on Broadway program (1997). Lisa created “Access for Young Audiences” (1995), a service that provides sign language interpreting, open captioning (added, 1998) and audio description (added, 2008) for students with hearing and vision loss who attend specially scheduled Wednesday matinee performances on Broadway. Lisa holds an MFA from Yale School of Drama.

Special Education Law and Advocacy Training by Wrightslaw: May 14th, Queens New York

Nationally acclaimed special education attorney and advocate, Pete Wright, will be presenting in New York City on May 14th, 2015 for a one day training course. Wright will speak to special education law, rights & responsibilities, tests & measurements to measure progress & regression, SMART IEPs, and tactics & strategies for effective advocacy. The course is from 9am – 4:30pm at the JFK Hilton in Jamaica Queens with CLE /CEU certificates offered with the professional rate.

For more information and registration details, visit the Kulanu website here.

Special Tours and Programs with New York City Museums for Children with Autism and Developmental Disabilities

New York City’s Museum of Natural History and Museum of Modern Art (MOMA) are introducing special tours and experiences for children with Autism.

The Museum of Natural History’s ‘Discovery Squad’ meets on select Saturdays for children ages 5- 14, accompanied by an adult, before the museum is open to the general public. Specially trained museum guides will lead a 40 minute tour through the North American Hall of Mammals (ages 5-8) or on an adventure through the Koch Dinosaur Wing.

For more information on the Museum of Natural History’s Discovery Squad, please visit their website here.

Each month the Museum of Modern Art’s program ‘Create Ability’ follows a different theme through the galleries to explore the art work and workshops to create in the classroom. These workshops are intended for individuals with developmental or learning disabilities ages 5-18+ and are free with pre-registration!

For more information on MOMA’s Create Ability programs, visit their website here.

 

Sesame Place Opens Exclusively to Autism Speaks & Variety Club Families on April 26th for Autism Awareness

Sesame Place, the nation’s only theme park based entirely on the award-winning television program, Sesame Street, opens exclusively to Autism Speaks and Variety Club children and their immediate families for Autism Awareness Month on April 26th, 2015. Registration opens on April 8th, 2015!

Special accommodations will be made to make sure all children, regardless of their disability, have an enriching experience. These accommodations include:

  • Designated quiet areas
  • Volume of public address system and music turned low
  • Characters are instructed not to initiate contact
  • Gluten-free, Casein-free foods
  • Staff training to familiarize the challenges those affected with autism face

There will also be a resource fair for parents to attend while the rest of the family plays.

For more information about the event and registering, visit the Variety Club’s website here or send an email to varietyphila@gmail.com.