The Autism Cliff: Transition Planning for Young Adults with ASD

April used to be known as Autism Awareness Month. In 2021, the Autism Society of America changed the name to Autism Acceptance Month, in order to more accurately reflect what the month is all about. “Awareness is knowing that somebody has autism. Acceptance is when you include [a person with autism] in your activities, help [them] to develop in that community, and get that sense of connection to other people,” according to Christopher Banks, president and CEO of the Autism Society of America.

In the United States, 500,000 young adults with autism will transition into adulthood over the next five years. However, a Centers for Disease Control and Prevention (CDC) survey using parent-reported data from the National Survey of Children’s Health found that students with an autism spectrum disorder (ASD) were less likely to receive transition planning than children with other emotional or behavioral conditions.

How One Mom Supports Her Son with ASD to Build an Independent Life

Kimberly Drake, a journalist and mother of a young man with ASD, serves on the governing board for a charter school specializing in the needs of students with autism. She recently described her personal experience with her son’s transitioning into adulthood and how it can be an exciting yet challenging time for a young person with ASD and their parents. She describes the “autism cliff,” or the loss of services that many young people and their families with ASD experience during this transition.

When her son was diagnosed with ASD, she quickly researched the therapies he needed to learn, grow, and manage his autism-related challenges. They included in-home therapy, school-based services, and nutritional therapies. Through the years, because of the time invested in researching and implementing various treatments and the effort invested in advocating for her son, she focused her energies on the present and never thought too far into the future.

As her son got older, Kimberly realized that even though he had experienced incredible progress, the challenges associated with ASD would not end when he became a legal adult. This realization made planning for his future a new and urgent priority.

Facing the “Autism Cliff”

Similar to many students with ASD in the United States, the educational journey of Kimberly’s son was mapped out with an Individualized Educational Program (IEP). An IEP is a legally binding document developed and instituted when a child meets the public school’s criteria for special education. An IEP outlines the child’s needs and designs an educational program to meet those needs by placing the child in smaller, sometimes contained classes, and adding speech and language therapy, occupational therapy, and/or the addition of support people to assist the child throughout the day. An IEP can continue for a student with ASD up to age 21, and students with IEPs are permitted to stay in school up until then.

Kimberly describes how the age 18–21 period is a time to shift the young person from educational-centered to adult-oriented learning. Much of this includes teaching independent living and job skills. She is dismayed that many schools don’t have the resources to develop transition programs that fully address the needs of students with ASD entering the adult world.

Learning Skills to Live Independently

Kimberly and her husband are in the process of teaching their son things he needs to know for independent living, such as doing laundry, paying bills, and shopping for and preparing food. In addition, his school’s independent living classes have also addressed these skills. Kimberly and her family advocated for and continue to support a transition center for those who age out of the school environment where learning these skills will continue.

Kimberly also was very fortunate to be able to acquire a small house close to her, which will eventually serve as her son’s home while he is adjusting to adult life and learning to live independently. Kimberly realizes that her son’s situation is not typical. Statistics suggest that about 87% of adults with autism live with or have lived with a parent at some point in their adult life. And even those who live independently generally still need some support. In addition to support, self-advocacy is also very important, especially for higher functioning adult children with ASD. The more they understand their strengths and challenges, the easier it will be for them to communicate this to bosses, coworkers, roommates, etc. This is also very helpful for those with sensory sensitivities. Teaching them about their specific sensory requirements and how to ask for accommodations can be a critical step in successful independence.

Teaching young adults with ASD about their rights, special laws that protect them, programs available to them, and how to ask for and get support when they need it can also help ensure a successful transition into adulthood. It is also helpful to openly discuss mental health, stress, anxiety, depression, and other symptoms that often go along with having autism and facing major life changes. By being able to express their needs in a positive way, young adults with ASD will be better able to cope with real-life situations as they arise.

Autism Speaks Offers a No-Cost Transition Tool Kit for Families of Young Adults with ASD

The organization Autism Speaks has developed a tool kit to help guide families of young adults with ASD on the journey from adolescence to adulthood. The kit provides suggestions and options for families to consider as they set out to find their child’s own unique path to adulthood. Topics covered include self-advocacy skills, legal issues, postsecondary educational opportunities, housing, and employment options. Click here to order the transition toolkit.

Some Additional Helpful Resources

The following resources are also helpful when it comes to transitioning to adulthood for those with ASD:

National Autism Resources:

  • The I’m Determined project focuses on providing direct instruction, models, and opportunities to practice skills associated with independent behavior.
  • The Going-to-College website contains information about living college life with a disability.
  • The Autism Help website has an extensive section on the teen years, including information about puberty, sexuality, and hygiene.
  • Project SEARCH provides employability skills training and workplace internships for individuals with significant disabilities, particularly youth transitioning from high school to adult life.
  • The Center on Secondary Education for Students with Autism Spectrum Disorder (CSESA) is a research and development project funded by the U.S. Department of Education that focused on developing, adapting, and studying a comprehensive school- and community-based education program for high school students on the autism spectrum.
  • Autism Speaks Postsecondary Educational Opportunities Guide is also designed to help individuals with ASD and their families explore the different opportunities and learning environments after leaving school.

Virginia Autism Resources:

  • The Virginia Department of Education has developed a document on transition, “Autism Spectrum Disorder and the Transition to Adulthood,” that includes important information on transition assessment and planning, adult services, postsecondary education, employment, home living skills, and Social Security and benefits planning.
  • The Virginia Roadmap includes a four-step process with links and various resources for the transitioning adolescent with ASD.

Maryland Autism Resources:

  • Developmental Disabilities Administration of Maryland – The mission of the Developmental Disabilities Administration is to provide leadership to assure the full participation of individuals with developmental disabilities and their families in all aspects of community life. In addition, DDA’s goal is to promote their empowerment to access quality supports and services necessary to foster personal growth, independence and productivity.
  • Pathfinders for Autism – Pathfinders for Autism is a parent-sponsored, nonprofit organization dedicated to improving the lives of individuals with autism. and their families.
  • One World Center for Autism.
  • Kennedy Krieger Institute (KKI) Center for Autism and Related Disorders (CARD) – The Center for Autism and Related Disorders (CARD) at Kennedy Krieger Institute is a multifaceted, multidisciplinary program that weds research, assessment, therapeutic, community outreach, and training goals all related to individuals with ASD and their families.
  • Parents’ Place of Maryland.

DC Autism Resources:

DC Autism Parents (DCAP) – The mission of this organization “is to improve the lives of all affected by autism in the Washington, DC Metropolitan area through advocacy, education, support, services, and research in order to promote community inclusion and awareness.”

Steps to Be Taken When Your Child with Autism Turns 18.

Guardianship and Conservatorship vs. Power of Attorney and Advance Medical Directive

One of the most difficult decisions that parents of a child with autism (or other special needs) face as the child transitions to adulthood is whether to petition the court for guardianship and conservatorship over their adult child at age 18, or whether to have their adult child sign a power of attorney and an advance medical directive. Both options allow parents to remain active and involved in personal decision-making and legal decision-making for their adult child, but a guardianship and conservatorship strip the adult child of their right to make decisions for themselves, whereas a power of attorney and an advance medical directive allow the child the autonomy to make the child’s own decisions, but with the help and support of the parent(s) if and when needed. In some cases, it is clear that children entering adulthood are incapacitated and will not be able to manage their own personal and legal/financial affairs, in which case guardianship and conservatorship is needed. In other cases, with many high functioning children, it is clear that they are not incapacitated and will be able to manage their own personal and legal/financial affairs, in which case having the child sign a power of attorney and an advance medical directive is the clear path forward.

However, for a significant percentage of children with special needs entering adulthood, it is not clear which of these options is best, which is where the expert guidance of an experienced special needs attorney comes into play.

Questions to Ask Yourself :

  1. Does your child tend to be “overly” generous?
  2. Are you concerned that your child will be taken advantage of or exploited (emotionally or financially) by other individuals?
  3. Are you concerned that your child will be earning money and make reckless or detrimental spending decisions?

If you answered yes to any of the above, then you should probably be leaning toward guardianship and conservatorship. If you answered no to all of the above questions, then a power of attorney and advance medical directive, part of what we call Level 1 Planning, are probably best. If you are on the fence, it’s generally best to start with Level 1 Planning and see how it goes, as you can always petition for guardianship and conservatorship later on.

Planning in Advance for Parents of Children and Young Adults with ASD and Other Special Needs

If you have a child with ASD or other special needs and something happened to you, what would happen to your child? A Special Needs Trust (sometimes called a Supplemental Needs Trust) is often an essential tool to protect the financial future of an individual with special needs. This type of trust preserves eligibility for federal and state benefits by keeping assets out of the name of the person with special needs, while still allowing the trust funds to be used to benefit the person with special needs. Learn more about Special Needs Trusts here.

When it comes to special needs planning, estate planning, and retirement planning, the attorneys at the Farr Law Firm can guide you through this process. Contact us to make an appointment for an initial consultation:

Special Needs Attorney Fairfax: 703-691-1888
Special Needs Attorney Fredericksburg: 540-479-1435
Special Needs Attorney Rockville: 301-519-8041
Special Needs Attorney DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.