According to research by A.J. Drexel’s Autism Institute, roughly half a million individuals on the autism spectrum will age into adulthood over the next decade. Becoming an adult can be challenging for neurotypical individuals, but for those with autism, that shift in routine and responsibility can be seismic. The transition from high school to adulthood poses significant challenges for individuals on the autism spectrum; the key to success is the degree of preparation during high school.
Autism is considered a “spectrum disorder” because it presents such a wide range of characteristics. A common saying within in the autism community is, “If you’ve met one person with autism, you’ve met one person with autism.” In other words, two individuals, even within the same family, can present widely different behaviors, challenges, and strengths.
Some individuals on the spectrum will struggle with socialization while others thrive and are relaxed in almost any social situation. Others will struggle academically while others excel to the point of being gifted. Some will struggle with communication while others develop complete and articulate vocabularies ahead their neurotypical peers.
There is very little that is typical or predictable about autism.
Brady Boose was diagnosed with Autism/PDD-NOS when he was two-and-a-half years old. He was nonverbal until he was almost nine when his vocabulary started to come back, gradually expanding to the place where he is now fully articulate. Brady’s early years were marked by outbursts of frustration that sometimes led to aggression, often leaving his single mother Brenda discouraged and overwhelmed at his future prospects. “It is essential parents educate themselves on what next steps need to take place and learn what resources are available in order to best advocate for your child,” she said in a recent interview. “You have to start very early thinking about your child being out in society. How is he going to conduct himself in society? The majority of people that are going to be around him are not going to know anything about special education. They aren’t going to know anything about being autistic.”
The key to individuals with autism living successful, happy lives, is early intervention. Researchers Karyn Blane and M. Christopher Borden at Brown University found that by identifying the central behavioral or emotional issues a child is struggling with, parents, caregivers, therapists and doctors can focus on those issues and provide the child with the tools they need to succeed by building on their strengths, improving areas of weakness, and by modifying problem behaviors before they escalate.
Part of this early intervention is building structure into the individual’s schedule. In an article published in Intervention in School & Clinic, autism researcher Terri Cooper Swanson emphasized the importance implementing strategies that help autistic individuals prioritize and focus on tasks. But where do parents begin?
The Individuals with Disabilities Education Act (IDEA) is a federal law ensuring that a free, age and skill-level appropriate public education is provided to eligible children with disabilities. In addition, it guarantees special education and related services to these individuals. Over 6.5 million individuals in the United States are eligible for services under IDEA. Infants through age two are provided services under IDEA Part C while IDEA Part B provides special education and related services to individuals ages three through age 21.
While IDEA standards are federally mandated, the implementation of specific services and support by individual states has gray areas. Support services throughout school districts nationwide are not created equally and eligibility standards can vary greatly.
Robyn McColligan’s son Nathaniel was diagnosed with Autism, ADHD Combined Type, Sensory Processing Disorder, and Anxiety Disorder at three years old while the family was living in New Jersey. Nathaniel was progressing well until the family relocated to South Carolina. Because Nathaniel was considered high-functioning by South Carolina standards, many of his services and supports were pulled. After three years, the family moved to Fairfax County, Virginia. In her first meeting with the school district, Robyn presented his IEP’s from New Jersey and his current IEP from South Carolina and explained what had happened. They agreed with the findings by the New Jersey team and created an IEP tailored to each piece of his diagnosis.
“The current IEP team have worked together with me to put a plan in place that we feel will give him the best opportunity for success. I’ve been very pleased and so thankful for those involved who do truly understand and try to help him in every way possible,” she says.
Many families are dependent on Medicaid Waivers to supplement their child’s support services. A study Maryland based study published in the Journal of Autism & Developmental Disorders found that individuals who were granted a waiver (providing access to more support services) often had more favorable outcomes in their transition to adulthood and a better quality of life, suggesting that expansion rather than elimination of such programs would be beneficial.
Lucy Beadnell is the Director of Advocacy at the Arc of Northern Virginia. Beadnell is passionate about seeing individuals with disabilities, including those on the autism spectrum, have equal opportunities and access to services that are promised under IDEA.
“Savvy employers understand the potential benefits of hiring an individual on the autism spectrum,” says Beadnell. “What may have been considered a ‘problem’ in some cases can easily be turned into a strength.” For instance, some individuals on the spectrum have a tendency toward laser-like concentration on a single task and can remain focused for an extended period of time. These individuals are less likely to get distracted during repetitive tasks, therefore requiring less supervision and seeking less social interaction. They’re also less likely to quit citing boredom or lack of variety. Others, like Brady, would feel stifled and unhappy in such an environment so the key to his post-graduation success is finding a vocation that is highly social.
Resources like the JobReady Quick Career Match Tool can be useful for helping autistic individuals refine what kind of job will work for them. The questionnaire sifts through the student’s abilities and preferences by having them rank from Always to Never their feelings about everything from social situations to learning new tasks, determining strengths to discovering transferable skills. This can be incredibly helpful for parents trying to manage their child’s sometimes unrealistic expectations about their career.
Other parents have found it helpful to utilize social media and create Pinterest Boards with their child. Together they collate and organize resources like Personal Hygiene worksheets or a list of vocational targets for individuals with ASD.
Ann Speidel is the Employment and Transition Representative at Centreville High School in Centreville, Virginia. As an ETR, Speidel functions as a liaison between community vendors and her students. “My job is to provide opportunities for community and job site experience along with support for students transitioning to either their chosen job or career and in some cases, college.” During the 2016-2017 school year, Centreville students worked at their choice of eight job sites, tailored to capitalize on their abilities while developing their weakness.
Megan Howard is another part of the team at Centreville High and serves as the Work Awareness and Transition teacher for students with disabilities. Howard helps her students explore career opportunities, manage expectations, and helps with mapping out the transition to life after high school.
Research sponsored by The Organization for Autism Research studied the success rate of post graduate employment for individuals with an ASD. Among their findings was the importance of targeting skills that students with autism can apply when on job interviews or in the work place.
With these findings in mind, one of Howard’s classes, Career Preparation, enables students to develop those essential job skills even though they aren’t yet ready to work at a community job site. These students focus on competencies such as working independently, problem-solving, and improving socialization skills. Her WAT class provides students who have demonstrated the skills necessary to move out into the community the opportunity work at a job site. The time spent on site varies between students and is based on their schedule and abilities. Some students work in groups, some independently, but all are developing the necessary skills to be able to find employment post-graduation.
A study published in the Journal of Autism & Developmental Disorders demonstrated that from adolescence through adulthood, individuals on the autism spectrum are dependent on parents and teachers to facilitate community and social opportunities that will, in turn, help them navigate relationships. Learning to read social situations within an office or as part of a vocational team is something most adults take for granted. However, individuals with ASD who lack social skills are at a higher risk of isolation and loneliness as adults, which is why Career Preparation classes like Howard’s are an essential part of the transition to adulthood.
Along with the in-house training and classes at Centreville High, students across Fairfax County have access to additional specialized services. The Fairfax-Falls Church Community Services Board (CSB) provides services for mental health, substance use disorders, and individuals with developmental disabilities. For most parents of children with disabilities, connecting with the CSB is the first step toward creating an action plan for the student’s future. CSB can help caregivers sort through the myriad of paperwork to determine what services and benefits their child is eligible for as well as help them initiate important services like assistance finding jobs as well as day, and/or residential services.
The Davis Center provides Fairfax County students aged 18-22 with disabilities who struggle in a traditional classroom setting the option to learn and grow in an adapted environment. By offering a modified curriculum focused on life and career skills, students have the opportunity to train and gain real-world experience while still under the supervision of their case manager and ETR.
Students who are on track and looking to work in an office environment may opt to explore the Education for Employment for the Office (EFEO) program. EFEO offers the students the opportunity to experience work in an office setting so they can determine if it’s the right fit.
Some may choose to go on to schools like Northern Virginia Community College while others will pursue full, four-year university degrees. Research by the US Department of Education found that close to 50% of individuals with ASD without an intellectual disability (ID) were pursuing a postsecondary educational degree. Though that is fewer than their peers, (62–69%), it demonstrates that pursuing a college education is well within the reach of many individuals with an ASD.
As part of their mission, the Virginia Department for Aging and Rehabilitative Services (DARS) enables individuals with disabilities the opportunity to prepare, find, and keep a job after graduation. At least one year prior to graduation, a DARS case manager will sit down with the student, their ETR and WAT teachers, parents or caregivers, and create an action plan. Once the case with DARS is open, students can explore different vocational paths. Based on what opportunities are accessible and available, together they will determine how the student can accomplish their goals.
According to the U.S. Bureau of Labor Statistics, only 19.3% of people with disabilities were participating in the labor force (working or seeking work) compared with 69.3% people without out disabilities. To combat this, Fairfax County has implemented a follow-up plan with graduates that checks in at the one-year, the three-year and the five-year mark. As a result of this strategy and the tools students have gained through WAT and Career Preparation classes, Fairfax County students are well above the national average. Speidel says, “I don’t have the current numbers off the top of my head, I can certainly get them for you, but we are consistently in the ninetieth percentile with people either being gainfully employed, or they are working part-time, or are in post-secondary education. Checking in like this tells us what is working in our career and transition training and where can we make improvements.”
Just like their neurotypical peers, individuals on the autism spectrum have hopes, dreams, and plans for their future. Early intervention, effective strategies and skill building programs, coupled with the support of parents and school staff are the best indicators of success.
“You always have to remember this is a community of people that most people don’t see. They deserve a quality life and meaningful work. I got emails all the time for my older son about college days and planning for your future,” Brenda says as she motions to Brady. “Where is his? We’ve got to go out and seek and find and fight for them.”