HELPING YOUR CHILD WITH AUTISM TRANSITION TO ADULTHOOD, THE WORLD OF WORK, AND INDEPENDENCE
BY KRISTA DIGREGORIO AND ERNST VANBERGEIJK, PH.D., M.S.W.
According to the CDC (2019) 1 in every 59 children has been identified with an autism spectrum disorder (ASD). This translates in approximately 16 children with an ASD out of every 1,000 kids. The developmental disability crosses all racial, ethnic, and socioeconomic groups. Autism is more prevalent among boys than it is among girls, with estimates that ASDs affect males at a rate 4 times greater than among females (Baio et al., 2018). The broader classification of developmental disabilities, in general, affects 1 out of 6 children.
These developmental disabilities range from mild to more severe. Milder forms of developmental disabilities often involve speech and language impairments. More serious developmental disabilities can include intellectual disabilities, cerebral palsy, and autism (CDC, 2018). There is a total of approximately 450,000 transition aged youth between 16-24 years old in the United States (U.S. Department of Health and Human Services, 2017). Each year 50,000 young adults with ASDs turn age 18 and are looking for post-secondary experiences (U.S. Department of Health and Human Services, 2017).
There are a number of post-secondary options for young adults on the autism spectrum. These options may also apply to students with other kinds of disabilities. Going to a 2-year or a 4-year college appeals to many students on the spectrum. They are no different than many of their neurotypical peers in this regard. Many students do have the intellectual and academic capacity to complete a college degree. However, finding and getting into the "right" college should not be the end goal. Rather, the goal should be entering the world of work and engaging in independent living. Often colleges do not prepare young adults for this major transition. Students with autism need explicit training in interviewing techniques, working with colleagues and supervisors, and a vari ety of skills pertaining to the management of an apartment like budgeting, bill paying, cooking and laundry. A few colleges do provide this type of training and support while the student pursues an academic degree. Another option is for the student to continue staying in their home school district to attend an in-district transition program.
MAKING THE TRANSITION: WORK & INDEPENDENCE
Regardless of whether a student stays in a school district transition program, attends and graduates from college, or attends a post-secondary transition program, there are a number of strategies parents can employ to foster their young adult's independence and employment. These suggestions or strategies hold true not only for students with ASDs, but for young adults with a variety of different kinds of disabilities.
Remember that your student is experiencing many "firsts" during this transitional year. Keep in mind that although employment is an immediate need, they may also be adjusting to living independently. Apartment living is unfamiliar and involves many new skills and should be treated as such. Guide them to learn to use free time effectively and create structure in their day. Much of this will take time and it is a very different experience than their previous education-focused experiences where most of their time was scheduled. Many parents stress only the employment component but should also acknowledge this adjustment. Allowing time and energy to be focused on independent living will benefit the student immensely when they begin to add working to the mix.
Stay flexible and open to a variety of positions. Clarify your preferences for full/part-time employment with your student prior to their job search. Also be clear on limitations due to potential benefits, including SSI and SSDI. Try not to specify one ideal position rather a bunch of options. Create an employment plan based on your student's needs and wants.
Acknowledge that this is your student's first paid employment experience. It will be an entry-level position and will pay accordingly. Confirm that that they will have many jobs in their career and each time add to their skill set in some way. Employers do not hire candidates based on their potential. They are interested in what they can contribute now.
Give your student some financial wiggle room. Understand that like most young adults, these students will most likely not be able to immediately cover all of their expenses. This is even more apparent if they are living independently. Often the added financial pressure students feel is too much for them to handle. Realistically, many parents will need to supplement their student's income for some time.
Treat your student as a young adult reaching for independence. They may have to work evenings, weekends and commute to their jobs. This is all part of the process. Please help them to accept this reality and stay positive. There are safety measures that can be put into place to ensure more peace of mind for parents.
Establish realistic expectations around your student's work schedule. It may be tempting to want your student to accept a job or seek multiple jobs based solely on budgetary factors. During this first year of independence, there are many aspects to consider before accepting a position and / or seeking a second job – access to transportation, ample time for classes, apartment management, sleep, and maintaining healthy social relationships, to name just a few. Strongly encourage your student to speak with their support staff and you before accepting or declining a position.
Allow your student to experience good and bad interviews. They will gain valuable skills and become more adept at handling a variety of situations this way. Have them solicit input from interviewers whenever possible and use that information to improve on their skills. If they are working with a program for employment assistance, they most likely can solicit this information for the student from the interviewer and use it to prepare for future interviews. Often the mistakes made in these situations are the most helpful for improvement.
Remember that a job search takes time. Encourage your students to keep communicating with their support staff and keep them in the loop throughout the hiring process. They cannot assist if they are not aware of employer contact, whether it be by phone or email. There is no magic number and the hiring process is not always predictable. We are all completely dependent on the employer's timeline and need to remain responsive at all times.
Please only communicate with employers through your student or employment support staff. Parents should never directly contact an employer. The relationship your student has with their employer is easily undermined. Often, employment support staff have fostered relationships with these businesses and can easily access management.
Provide support and allow employment support staff to use their expertise. They most likely have many years of experience in similar situations and can often anticipate outcomes you may not expect or predict. Remember they are equally motivated to have all of their students employed.
Often school districts will work in coordination with state offices of vocational rehabilitative services to help train and locate employment for the student. A third option involves community-based or collegebased transition programs. Communitybased transition programs can be either private, for-profit or not-for-profit entities which typically operate out of an apartment complex. Many have memoranda of understanding with local community colleges. Qualified students can take creditbearing classes through these agreements. Independent living skills are often taught directly in the young person's apartment and are ideal for those students who have difficulty generalizing skills across environments.
ronments. College-based transition programs, on the other hand, are departments of the college or university in which they reside. They draw upon the infrastructure of the university and many have a residential component to the program in addition to a specialized curriculum focusing upon the acquisition of employment, independent living, and social skills (with an eye on community involvement). Some of these college-based transition programs will be able to offer federal student aid. Others offer institutional aid or work in cooperation with school districts to fund the students' attendance. College-based transition programs may even offer a graduated structure of services starting with living in the dormitories to providing a "transition year program" after living in the dormitories, and following a core curriculum of employment training along with independent living skills classes. These post-transition programs help their graduates find and keep employment and provide inhome supports through Independent Living Advisors (ILAs) who visit the apartment on a regular basis.
The transition from post-secondary education to the world of work and independent living is both exciting and nerve-wracking for both the young adults with ASDs as well as the parents. Know that there will be many advances and some set-backs. The key is to be patient and provide sufficient scaffolding to allow their growth to unfold.•
ABOUT THE AUTHORS: Krista DiGregorio is the Director of Lesley University's Threshold Alumni Center, providing free lifetime employment and independent living supports to all Threshold alumni. Dr. Ernst VanBergeijk is the Director of Lesley University Threshold Program which is a collegebased transition program for students with a wide variety of learning challenges. Lesley.edu/threshold
References Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ 2018;67(No. SS-6):1–23. DOI: dx.doi.org/10.15585/mmwr.ss6706a1 Center for Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities (April 9, 2018). Key Findings: Trends in the Prevalence of Developmental Disabilities in U. S. Children, 1997–2008. Retrieved from: cdc.gov/ncb- ddd/developmentaldisabilities/features/birthdefects-ddkeyfindings.html March 14, 2019. Center for Disease Control and Prevention. (2019). Data & Statistics on Autism Spectrum Disorder. Retrieved from: cdc.gov/ncbddd/autism/data.html March 14, 2019. U.S. Department of Health and Human Services. Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services website: hhs.gov/sites/default/files/2017AutismReport.pdf March 14, 2019.