A bill which aims to create a clearinghouse comprised of public, private and non-profit resources for parents of autistic children in Maryland, seeks to ease the burden put upon families as they look for resources from healthcare to employment to future independent living.
Maryland has one of the highest rates of autism in children in the nation. Coming in second to New Jersey, with one of out of every 50 children diagnosed with the condition in the state, according to data from the Center for Disease Control (CDC). The national rate is one out of 59 children, according to the most recent CDC data.
Autism spectrum disorder (ASD) is a neurological and developmental disability, according to the CDC, that can cause significant social, communication and behavioral challenges. The severity of the challenges range on a spectrum from severe impairments to high functioning savants.
But Del. Michele Guyton, a Democrat who represents Maryland’s legislative district 42B in Baltimore County, says the population is an “untapped force” as families and those with neurological differences seek to participate in society.
The goal of the bill “is to get people independent,” Guyton said. “Half are at average to above average intelligence which mimics society,” she said. “We are losing untapped talent.”
The bill would also aim to create a “strategic master plan for the autism community that is going to deal with the issue that we are facing. Those issues are underemployment and unemployment,” she said.
Guyton said the goal is also to “get people with autism off of federal assistance. How many of them are self-supporting?”
Guyton, whose bill is still being formulated and will be introduced this legislative session, is the mother of an autistic son who is currently working on a graduate degree in theoretical nuclear physics.
Prior to winning her seat in 2018, Guyton, a developmental psychologist with a specialization in development psychology, also served on the Maryland State Board of Education for four years.
She says that Maryland legislature needs to catch up to the state’s rising rate of autism diagnoses by being proactive and ready to serve families and the ASD population by providing them with a clear pathway to resources as they wade through information to meet their specific challenges.
According to a 2007 CDC report, one in 150 eight-year-olds were diagnosed with ASD in the United States in 2000-2002, although researchers do not know if identification of the disorder has improved or if cases are rising.
ASD is about 4.5 times more common among boys than among girls in the state and is reported to occur across all racial, ethnic, and socioeconomic groups, according to the CDC. Maryland’s identified ASD cases rose 10 percent since a 2004 study.
Guyton says it’s an epidemic that Maryland needs to address head-on. Delegate Hettleman, a Democrat who represents the 11th legislative district, has already thrown her support behind the bill as its first co-sponsor.
Guyton spoke briefly to the proposed bill at Autism Rocks earlier this month, a fashion show and fundraiser which benefited Safe Minds, a national advocacy group for autism which is working on federal legislation called the Autism Effectiveness, Responsiveness, and Accountability (ERA) Act of 2019.
The ERA Act seeks to improve the health status and quality of life for people living with autism and their caregivers, while reducing the associated costs for individuals with autism, their caregivers, and the U.S. Government.
Guyton and Hettleman also modeled, walking on the catwalk in the Autism Rocks show, along with parents and several autistic children and young adults, including Rachel Barcelona, the first Miss Florida 2019 pageant contestant who works to promote autism awareness.
The proposed Maryland legislation, if passed, would create a position of deputy secretary to serve as a governor-appointed coordinator in the state’s Department of Disabilities.
The deputy secretary would evaluate and recommend services as a point-person for families and would be tasked with 11 specific measurable goals that are still being finalized.
Along with the position, an advisory board would be created to formulate a proactive master plan and would look to improve access to healthcare, employment, self-sufficiency and eventual independent living for young adults on the autism spectrum.
Guyton says the bill is focused on planning for the ASD community, as well as fiscal oversight and social responsibility.
She said the bill is a “heavy lift,” but said, “We need to take ownership of this issue. It’s an epidemic, it’s an emergency… it’s about providing services when there is a need…We cannot ignore this population any longer and we cannot afford to,” Guyton said.