Support for Families of Children with Autism

written by LINDA HARKCOM

Families with children who have been diagnosed with autism spectrum disorder know that where they live can affect how they meet their children’s needs.

That is why Autism Parenting Magazine recently created a guide featuring the most and least supportive states for raising a child with autism. In it, Maryland is ranked as one of the most supportive states in the country.

According to a study by the Autism and Developmental Disabilities Monitoring (ADDM) Network, funded by the Centers for Disease Control and Prevention (CDC), about 1 in 54 children in the United States have been diagnosed with autism spectrum disorder (ASD). The same organization estimates that 1 in 52 children in Maryland have been identified with ASD.

In an April 13, 2021, article titled “Which States Are Most Supportive for Raising a Child with Autism?,” Autism Parenting Magazine ranked Maryland fifth on the list of 10 best (most supportive) states for raising a child with autism. Other states on the list, in order, starting with No. 1 are Colorado, Massachusetts, New Jersey, Connecticut, New York, Pennsylvania, Wisconsin, Rhode Island and Montana.

“To conduct our research, we looked at the best states in the USA for resources and merged these with the states that offer the most in terms of insurance mandates, grants and inclusion of the ADDM Network,” the magazine article states.

Maryland’s ranking was based upon the state having 11 specialist schools, 13 applied behavior analysis (ABA) therapy providers and three sensory gyms, as well as being ranked sixth in the nation for insurance coverage.

Pathfinders for Autism

Trish Kane is deputy director of Pathfinders for Autism, a parent-sponsored, nonprofit organization dedicated to improving the lives of children and adults with autism and their families throughout Maryland. While Kane said she had not read the Autism Parenting Magazine story, she is familiar with Maryland’s programs.

“I do know that Maryland is a model for the autism waiver program. Getting on the Autism Waiver Registry is an important first step for a new diagnosis,” Kane said. “In addition, there are many organizations, agencies, groups who we collaborate with regularly throughout the state that provide support and resources to the autism/ IDD (intellectual and developmental disabilities) community. In that respect, I do believe that Maryland does provide a supportive environment for the autism community.”

She said the Maryland Association of Nonpublic Special Education Facilities (MANSEF) represents more than 90 nonpublic schools throughout Maryland that serve students with a range of disabilities.

“Our schools serve young people with physical, emotional and developmental needs that cannot be adequately met in public schools,” Kane said. “MANSEF schools are an integral part of Maryland’s highly ranked educational system, providing high-quality educational opportunities and support services to Maryland children and youth with disabilities.”

Laurel Hall School

Of the 11 specialist schools in Maryland, three are in Washington County: Cedar Ridge School, Laurel Hall School and Oak Hill House School.

Brook Lane’s Laurel Hall is a member of MANSEF. It is a nonpublic school designed to provide education services to students with special needs. Laurel Hall School has a second location in Frederick County that also serves students living in Washington County.

“Laurel Hall in Frederick services students on the spectrum, but some students who have a primary diagnosis of other disabilities that would qualify them for special education also have (a) subset diagnosis of autism,” said Rachel Hull, director of education services at Laurel Hall.

Laurel Hall serves male and female students ages 5 to 21 in kindergarten through 12th grades from Maryland, Pennsylvania and West Virginia.

“Also, we have a certificate-of-completion track which focuses on independent living, life skills and vocational living,” Hull said.

The program offered by Laurel Hall includes focusing on development of social skills and communication for autism-spectrum students. Credits earned meet the Maryland State Department of Education’s requirements for graduation and the issuance of a diploma. “With being a Maryland Type 1 special-education school, we have highly qualified staff, structured routines, small student-to-staff ratio, smaller classrooms and more intensive behavioral and emotional support that students receive on a daily basis,” Hull said. “Some students have one-to-one behavior specialists that help with all needs that support them functionally, as well as academically. We also train staff on how to support students individually with crisis management in the areas of sensory regulation and implementation, as well as specialized interests. We also specialize and emphasize generalization of communication, both in and outside of the classroom.” She said knowing students are receiving such support is important to parents. “We hear from families all the time on how supported they feel, knowing that students receive this type of structure and care daily, as well as the communication they receive from the school on what things are working, what things to avoid and detail as to what they can try at home to help generalize the skills they are learning while at school.” The school also offers adaptive physical education that supports the additional time and sensory input that might be beneficial to students. “We have the capability to support students by taking them to community outings, such as the grocery store, restaurants, shopping centers, food banks/soup kitchens – pre-COVID – to practice skills that are learned in the classroom that then can then be applied, with the support of the teachers and staff,” Hull said. The school also has the opportunity to utilize resources, such as equestrian therapy and pet therapy, and has extensive sensory rooms at both locations, as well as a rock wall and sensory paths.

Rachel Hull, director of education services at Laurel Hall School in Frederick, Md., is in front of the school’s rock wall, which is used for classes in adaptive physical education.

Submitted photo

Washington County Public Schools

Not all students with ASD attend a specialist school. Washington County Public Schools offers services for students through the Birth to Kindergarten Program until they turn 21. Students who earn the required credits to graduate with a diploma successfully exit special education.

The program works closely with families to help a child make gains within daily routines, supports children to be active and successful in a variety of settings, and puts a family’s needs first because parents and caregivers are their child’s No. 1 teachers. Families receive coaching through a primary service provider model, where one early interventionist serves as the main provider for the child and family with access to the Birth to K team, which includes a teacher; speech-language pathologist; occupational therapy; physical therapy; vision teacher; and social worker for teaming and consultation. There is no cost to eligible children for this year-round, voluntary program.

“It is important (that) all students who may be eligible for early intervention or in need of special-education services be referred, identified and supported,” said Jeffrey S. Gladhill, director of special education for Washington County Public Schools. “Students with suspected developmental delays in cognition, communication, social-emotional, adaptive and motor skills that manifest prior to the age of 3 may be eligible for early intervention services through the Washington County Public Schools Birth to Kindergarten Program. Special instruction and related services are provided to students eligible for an Individualized Family Service Plan (IFSP). Together with families, the Birth to K Program works to prioritize a student’s developmental needs, embed learning in daily routines, and support students to be active and successful in a variety of settings.” WCPS’ RISE (Reaching Independence through Structured Environments) program supports learners with acute needs. The RISE program is developed for students in grades kindergarten through 12.

“By growing socially and emotionally, students reach independence through tiered instruction to access their most appropriate educational setting,” Gladhill said. “Utilization of expressive and receptive language skills are particular areas of emphasis in this program. Staff work closely with students to increase their development of social skills to promote further development of positive peer relationships. A goal for all RISE students is to ensure that each student is socially, emotionally and academically prepared for lifelong learning and living in an ever-changing environment.”

Creations Clinical Services

Of the 13 ABA therapy providers in Maryland, eight are within 25 miles of Hagerstown. Two are in Hagerstown: Achieving True Self - Hagerstown and Creations Clinical Services LLC. The other six are in Frederick.

Creations Clinical Services’ scope of services includes behavior assessments, evaluation, creating behavior plans, one-to-one implementation of behavior therapy, training for parents and caregivers, behavior support plan monitoring and crisis management. “ABA is an evidenced-based approach that focuses on learning and behavior using contingencies of reinforcement. Our focus in providing ABA services to children is making sure we are creating lasting behavior change by focusing on socially significant behavior,” said Ashley Lawal, owner at Creations Clinical Services LLC. Lawal, a board-certified behavior analyst, is also a licensed behavior analyst in Maryland and Virginia. Currently, the practice serves children and their families in Prince George’s, Montgomery, Frederick and Washington counties in Maryland, as well as in Northern Virginia. “I utilize ABA by first sitting down with parents/ caregivers to get an understanding on what they Getty Images need to help their child or children to be successful within society,” Lawal said. “A functional behavioral assessment is completed that consists of interviews with family members, as well as observation and probing, testing, of skills. Challenging behaviors are also identified, if necessary, and through assessment and observation, I identify the ‘why’ of the behavior. Various behavior strategies, such as shaping, chaining, incidental teaching, pivotal-response training and so many others are used for children to acquire, maintain and generalize skills. Understanding and applying specific antecedent, (preventive) replacement and consequence strategies based on the functions (why) of behavior can help decrease challenging behavior.”

According to Lawal, parent involvement is crucial in the success of ABA therapy. She said it takes a team of ABA professionals, board-certified behavior analysts and registered behavior technicians, as well as families, to make a difference.

“Everyone on the child’s team should utilize the same evidenced-based strategies so the child is most successful and does not regress,” Lawal said. “ABA is not the most effective when only the ABA professionals are focused on treatment. Family members spend the majority of the time with the child, and it would be beneficial for them to be involved as much as possible. I have personally seen the success of a child acquired quickly when all are involved.”

Brook Lane’s Thrive program

Brook Lane’s Thrive program offers support for families with children ages 5 to 18. Some programming is available for younger children. The autism-friendly program has groups designed to help students build on social and emotional regulation skills to help them be successful with peers, family members, teachers and others.

“The group program offers children an opportunity to see that they are not the only one struggling, they are not alone, and that there are people – both adults and peers – that value and accept them as they are now, and care about them enough to offer opportunities for them to grow,” said Jessie Davis, a licensed certified social worker who runs the Frederick branch of the Thrive program. “Thrive works on helping children develop social and emotional skills to aid them in developing and maintaining healthy relationships. Additionally, Thrive works to build the self-esteem, growth mindset and confidence of every client. Thrive works with every client to make sure they are accessing the most appropriate services for their treatment goals.”

Importance of an individualized approach

One thing on which each provider agreed was that not every child on the autism spectrum is the same, and they and their families face different challenges.

“That is exactly why it is called autism-spectrum disorder,” Lawal said. “That is also why ABA should be utilized using an individualized approach, not a one-size-fits-all. Many families have difficulties with being able to manage challenging behavior or do not know where to begin with teaching a new skill. Using behavior analytic strategies, I am able to help with communication, social skills, emotional regulation, attending, selfhelp skills such as dressing, feeding and toileting, daily living skills and decreasing challenging behavior, such as tantrums, self-injury, elopement, vocal and motor stereotypy, fecal smearing, verbal aggression and the list goes on.”

Hull said additional support outside of the school is always a concern.

“Communication needs and support for both behavior and communication at home is also sometimes a basic essential,” Hull said. “We try to send and share as many individualized support plans, communication matrix, social skills lessons or logs that can encompass the power of home and school communication, which in turn really does support both parties to be successful.”

Gladhill said one of the school system’s most effective strategies in meeting the needs of students is helping families make connections, and it begins with Birth to K services.

“We continue to offer informal play groups for families to learn hands-on strategies with professionals, such as social workers, teachers, occupational therapists, physical therapists, school psychologists, speech-language pathologists and other related service providers,” Gladhill said.

WCPS developed a parent portal offering instructional/behavior resources/strategies and additional information about services it provides. The site also has links to resources through the Maryland State Department of Education and training through the Washington County Family Support Resource Center.

Where to go for help

What should parents do once their child receives an ASD diagnosis?

Hull recommended contacting the local school/district to initiate the process for determining eligibility for special education.

“With possible delays in communication, social skills and learning, some parents do not know where to start. The first step for a new parent of a child suspected of having a disability, including autism, is to make a child-find referral to our Birth to K Program,” Gladhill said.

Hull also recommended Autism Speaks, Maryland Learning Links and MANSEF as resources.

The Pathfinders for Autism website, pathfindersforautism.org, is a resource for parents.

Kane recommended that parents sign up for the Autism Waiver Registry by calling 1-866-417-3480. For information about the waiver, call the Maryland State Department of Education at 410-767-1446 or the Maryland Department of Health at 410-767-5220.

Kane also encouraged families to connect to Facebook autism groups.

“As a parent of a child with autism, you become part of a larger community that ‘gets it,’ Kane said. “This community will guide, support, listen and share their tips and strategies with you. At Pathfinders for Autism, the resource center is staffed with parents of children with autism, different ages, communication styles and a variety of life experiences that we share with callers. The one thing that I would communicate to families raising a child on the spectrum is, you are not alone.”

To contact Creations Clinical Services LLC, call 240-651-9432 or email info@creationsclinicalservices.com.

To contact the WCPS Birth to K Program, call 301-766-8217 for those 33 months old and younger; or 301-7668509 for those 34 months to age 5 (or entering kindergarten).

For information about Laurel Hall, contact Rachel Hull, director of education services, at 301-733-0331, ext. 1278; or email rachel.hull@brooklane. org. Go to brooklane.org/laurel-hall for a virtual tour.

To access resources available through Pathfinders for Autism, call 443-330-5341 or go to pathfindersforautism.org.

For information about Thrive, call 301-733-0331, ext. 1703; 800-342-2992; or go to brooklane.org/child-adolescent-services/thrive.