Adults with Autism
From Nowhere to “Know Where”: Transition to Adult Services
By the Utah Parent Center
What is in store for youth with disabilities after they leave school? What will happen to your child when they no longer receive the educational services or accommodations which have been mandated by federal law? These questions are important to all parents of youth with special needs, and even though disabilities may vary greatly in their severity or impact, the need to plan for the future is very important. The Utah Parent Center has a collection of fact sheets and a user-friendly parent handbook on preparing your child to transition to adult services. Learn more today!
As the individual with autism approaches 18 years old, there are some decisions to be made. One important decision is whether or not you will need to seek guardianship of your young adult. The best time to consider various options for supporting your son or daughter in the future is while you are still the one responsible for making decisions about his or her education, safety, and well-being. “Guardianship cases can only be heard and determined by the court once an individual has reached the age of majority (age 18). Cases CAN be filed prior to an incapacitated person’s 18th birthday, but CANNOT be heard before that person’s 18th birthday.” www.nationalautismassociation.org/family-support/ guardianship/
Guardianship is a legal process that allows someone (usually a family member) to ask the court to find that a person age 18 or older is unable (incompetent) to manage his/her affairs effectively because of a disability. A guardian steps in the shoes of the person with a disability and makes decisions in the individual’s best interest. Guardianship is a legal matter that has consequences for both parents and child/children which involves the court system.
This decision should not be taken lightly as guardianship can take away many of the person’s rights. On one hand, it puts protections in place so your son or daughter can live life more safely, with as much self-determination as possible; on the other hand, it limits civil rights. By its very nature, guardianship is quite restrictive. He or she is usually stripped of the authority to make decisions that is granted to adults.
Guardianship and Other Options?
The Utah Judiciary is committed to the open, fair, and efficient administration of justice under the law. There is valuable information available for you on the Utah Courts website ~ Self-Help Resources / Guardianship and Conservatorship ~ that will help you better understand the process and if guardianship is right for you and your loved one living with autism.
There are other options to be considered besides guardianship, such as conservatorship or having an educational advocate. Another option is using person centered planning or supported decision making to help the adult with disabilities to make decisions.
If one of these options are a possibility for you, you will need to educate yourself with what that will encompass.
Things to Consider
If you feel you need to learn more about future care-taking options for your son or daughter, here are a few suggestions to get started:
Learn how Utah defines guardianship. What guardianship options exist, and what are the laws that govern them?
Explore the differences between guardianship, conservatorship, having an educational advocate, person-centered planning and supported decision making. What would each mean for you and for your young adult?
Determine the best way to provide support to your son or daughter. What is the least restrictive way to provide your young person with the support he/she needs to make decisions?
Determine the level of support needed. How much support is needed to make sound decisions and choices? Does he or she need support, for example, in identifying when to make a decision? In exploring options? In coping with the consequences of choices? What types of supports does he or she need?
Consider the “informal” supports your young adult already has (for example, a network of family or friends). Are these enough to support him/her in decision-making, or will more supports be needed?
Resources for more information about guardianship
My Voice Counts ~ "My Voice Counts” was designed and created by the Utah Advocates as Leaders, Self- Advocacy Speaker’s Network. The speakers of the network researched and wrote this guide to help self-determined people think about ways in which their voices can be heard when making both simple and hard decisions.
Guardianship Signature Program ~ Utah State Court Fact Sheet
Advance Life Planning and Guardianship Online Training Provided by the Utah Courts ~ This 30 minute online class includes sections on Planning Ahead and Alternatives to Guardianship, Health Care Decision Making, Financial Decision Making, and Making a Plan and Finding Resources. Additionally, there is also a 40 minutes online class on the Court Process and Procedures.
Social Skills Groups for Adolescents and Adults
Autism Spectrum Disorder Clinic ~ Social Skills Groups For Youth with Autism Spectrum and Related Disorders at the Child and Adolescent Behavioral Health Clinics. What makes the Autism Spectrum Disorder Clinic different?
Our team has extensive education and experience in understanding the needs of people with autism spectrum disorders. We have worked with children, adolescents, adults, and their families across the continuum of care, including public schools, hospitals, day treatment settings, and outpatient settings.
Our goal is to partner with individuals and families to improve the lives of individuals with autism spectrum disorders.
Autism spectrum disorder assessment
Social skills groups for children, adolescents, and adults
Early intervention services
Referral support to occupational and speech therapies
Opportunities to participate in research to help us better understand ASD
Additional therapeutic and educational groups such as relationship training, sexuality, and art and music therapies
650 Komas Drive, Ste. 206 Salt Lake City, UT 84108
The Autism Spectrum Disorder Clinic is a partnership between the Department of Psychiatry, the Neurobehavior HOME Program and the University Neuropsychiatric Institute directed by Clinical Director Natalie Buerger, PhD
Summer Leisure Group for Youth: This is a weekly group for youth ages 8 to 13 on Wednesdays from 4:00 to 5:00 p.m. from the end of May through August. Activities include building and racing boats, games that build teamwork skills, and outings. Call or email Jubel Morgan, R.N. for more information at: (801) 587-3775 or email@example.com
Youth Group For children ages 8 to 13, this group meets on Wednesdays each week from September through May. The group runs from 4:00 to 5:00 p.m. Activities address a wide range of social skills that group members build through games, hands-on activities and direct instruction. Call or email Jubel Morgan, R.N. for more information at (801) 587-3775 or firstname.lastname@example.org
Adolescent Groups: These groups are aimed at adolescents ages 13 to 18 and run from September until May. To obtain more information or sign up, call (801) 587-8020.
Transition Tool Kit developed by Autism Speaks
Transition Guide developed by Organization for Autism Research
Transition Undefined by Autism After 16
NICHCY’s Transition Summary series, Resources for Adults with Disabilities, focuses on preparing youth with disabilities to move from high school to the adult world.
Services for Adults with Disabilities This publication helps adults with disabilities identify organizations and agencies designed to assist with their specific concerns and needs, such as employment, postsecondary education, recreation, independent living, and assistive technology.
Transition Planning: A Team Effort This Transition Summary provides ideas and information on how students, families, school personnel, service providers, and others can work together to help students make a smooth transition. In particular, this document focuses on creative transition planning and services that use all the resources that exist in communities, not just the agencies that have traditionally been involved.
The information above is courtesy of the National Dissemination Center for Children with Disabilities. https://www.naset.org/index.php?id=transplanning2
What to do at 22? As young adults reach age 22 most families want to celebrate. But for families with an autistic child, a 22nd birthday can be a time of great stress. That’s because some needed services may no longer be available to their child as they “age out” of the system. The one hour film “Autism: Coming of Age” explores the hopes, fears and challenges of parents raising children with autism. A documentary on UEN.
Peter Gerhardt, Ed.D. – Transitions to Adulthood for Learners with ASD Today, professionals, families and learners with ASD are beginning to redefine the outcomes of the transition process beyond simple job placement to focus on career development and measures of personal competence and life satisfaction. To this end, this presentation will provide an overview and practical suggestions for transition planning AT ANY AGE in support of desirable and individualized employment outcomes with attention to assessment, community based training, employment development, job-related social skills, and quality of life concerns. https://www.milestones.org/resources/community-resource-center/transitions-to-adulthood-for-learners-with-asd-peter-gerhardt-edd
Becoming Leaders for Tomorrow (BLT) Youth Leadership Toolkit
By BLT, Center for Persons with Disabilities, Utah State University
The young adults on the BLT Advisory Committee told them that they should provide training on other topics, like leadership, self-advocacy, social skills, transportation, and more. So BLT made more videos (nearly 2 hours) of young adults sharing their hints and tips for other youth and young adults; parents; doctors; and other professionals. They also made a guide book to go with the videos/DVD. The guide book is for facilitators and provides some background and several discussion points and questions to use during training event. Find out how to get your copy of the Toolkit.
Resources for College & University Students with Disabilities
Adult Autism Center for Lifelong Learning
The first of its kind. The Adult Autism Center seeks to provide hands-on training focused on daily living and vocational skills. https://adultautismcenter.org
ASAN’s Navigating College Run by and for Autistic people, ASAN was created to provide support and services to individuals on the autism spectrum while working to educate communities and improve public perceptions of autism. The handbook and corresponding website, Navigating College, is a first-of-its-kind resource written by autistic adults for autistic college students exploring the various aspects of the higher education experience.
Brigham Young University University Accessibility Center 1520 Wilkinson Center Brigham Young University Provo, UT 84602 (801) 422-2767
College of Eastern Utah Disability Resource Center College of Eastern Utah 451 East 400 North Price, Utah 84501 (435) 613-5806
Dixie State College Disability Resource Center Edith Whitehead Building Student Services Center Counseling and Advisement Room 201 225 South 700 East St. George, Utah 84770 (435)-652-7516
Salt Lake Community College Disability Resource Center 4600 So. Redwood Road Salt Lake City, Utah 84123 (801) 957-4659
Snow College Accessibility Resource Center Snow College 150 E. College Avenue Ephraim, UT 84627 (435) 283-7321
Southern Utah University Disability Support Center (435) 865-8022
University of Utah Center for Disability Services 162 Union Building 200 South Central Campus Drive Room #162 Salt Lake City, Utah 84112-9107 (801) 581-5020
Utah State University Disability Resource Center 0101 Old Main Hill Logan, UT 84322-0101 (435) 797-2444
Utah Valley University Accessibility Services Business Building (WB 126) Utah Valley State College 800 West University Parkway Orem, UT 84058 (801) 863-8747
Weber State University Services for Students with Disabilities 1129 University Circle Ogden, UT 84408-1129 (801) 626-6413
Westminster College START Center 1840 South 1300 East Salt Lake City, UT 84105 (801) 832-2280
All information provided on the ACU Web site is provided for information purposes only and does not constitute a legal contract between the ACU and any person or entity unless otherwise specified. Any views or opinions presented are solely those of the author and do not necessarily represent those of the ACU. Information on the ACU website is subject to change without prior notice. Although every reasonable effort is made to present current and accurate information, the ACU makes no guarantees of any kind.