Organization for Autism Research (2021). Life Journey through Autism: A guide for transition to Adulthood. https://researchautism.org/families/guidebook-series/

Reviewed by Cecilia Wayua, MSc, Extern
Association for Science in Autism Treatment

Life Journey Through AutismAs my children enter their teenage years, I find myself now more than before thinking about their future. Questions such as Is the education they are getting at school going to offer the right opportunities? What about relationship skills, problem-solving, decision making, and independence? Etc. I want to believe I am not alone in this internal soliloquy as significant life transitions, such as becoming an adult, are met with a myriad of emotions. However, these questions take on a different meaning for parents and caregivers (referred to as caregivers from here on) of autistic children. For most, transitioning and thriving during adulthood can boil down to independence in activities of daily living such as toileting, self-feeding, personal hygiene, decision making (with or without support), and using public transportation- skills that parents of neurotypical children can take for granted.

Even though this period can be a challenging one, there are options, resources, and strategies that can contribute to a more successful transition to adulthood. In this vein, the Organization for Autism Research (OAR) published a booklet entitled, Life Journey Through Autism: A Guide for Transition to Adulthood, to support caregivers as they prepare their autistic children for adulthood.

This article is a summary of the transition plan as discussed by the OAR. Our summary will explain why we believe the guide is a valuable addition to the literature on transition planning.

If your child has an Individualized Education Plan (IEP), you may be aware that transition begins no later than when the autistic child is 16 years old and, in some states, it may begin as early as 14 years or younger. However, the guide advises caregivers to refer to their state’s transition regulations as different states may have different requirements.

The guide opens with a discussion of the laws and policies that ensure you and your child have access to the resources needed as you prepare for their transition. It discusses the role of the Individual with Disabilities Education Act (IDEA), Section 504 and Americans with Disabilities Act (ADA). It also talks about the different state and federal agencies that can support you as you navigate the transition process.

    • Planning to Plan: According to OAR, the transition plan should begin with a pre-planning session by the caregivers of autistic children. It proposes that caregivers should reflect on the future they want for their child in terms of what they would like their child’s life to look like in five, ten, or twenty years, and the skills and resources they will need to achieve this. Based on this, they should then write down overarching goals outlining the future that they want for them. This should be followed by a brainstorming session on the anticipated obstacles in terms of skills and resources that might hinder their child from reaching their goals. This brainstorming and reflection process should take place long before the caregiver is called upon to offer specific goals and objectives for their child.
    • The Transition Team: The guide suggests assembling a transition team consisting of you and your child, interested family members, a transition coordinator, your child’s general educator and special education teacher, administrators, representatives from adult services and other related services. It emphasizes a student-centered transition plan in that all those involved should consider the student’s personal goals, interests and preferences throughout the planning process. Your role as a caregiver (if your child is not able to) is to advocate for your child’s move towards independence. For those capable, the IDEA requires that they be encouraged to voice their own preferences, set or help choose relevant goals, identify problems and help solve them, and make choices based on personal preferences.
    • Vocation and Employment: For many individuals with autism, the transition into adulthood may include entry into the workforce. Work-related choices should be in line with the student’s interests, preferences, and abilities. It is advisable that the student, if capable, should lead the way in this area. Your role as a caregiver is to advocate for work related objectives, including writing a resume, searching and applying for jobs, preparing for interviews, and following up with companies, to be included in your child’s transition plan and to find opportunities for them to practice employment-related skills. The OAR guide gives a comprehensive list of job possibilities for autistic individuals.
    • Post secondary Education: If your child has post-secondary education as one of their goals, the transition plan ought to take this into consideration. The OAR advises early consideration of proficiency tests such as American College Testing (ACT) and Scholastic Assessment Testing (SAT). The transition plan should aim to identify a match between your child’s academic strengths and their career interests. It is advisable for families and schools to begin working on this objective early, allowing enough time to explore options, collect information, and support the acquisition of college-readiness skills such as organization, time management and independent living. Additionally, college preparation should ensure teenagers are prepared for the social challenges they might encounter in college including peer pressure, drug and alcohol use, sexual safety, dealing with difficult roommates, social media, and cyber safety. Caregivers and autistic students can refer to OAR’s guide for college-bound autistic students.
    • Life skills: The guide begins this section with a discussion of living arrangements, starting with the most independent and progressing to the most dependent. Your child’s mastery of life skills will play a critical role in their future living arrangements. First, it discusses various activities of daily living, including personal hygiene, toileting etc. Caregivers are encouraged to decide early on the living arrangements they foresee for their child and begin working on the acquisition of required life skills. Next, it discusses functional skills, which include what your child will need to navigate living independently such as shopping, money management, house maintenance, use of technology, etc. Other suggested areas of focus include health and safety skills such as responding to fire alarms appropriately, scheduling and attending medical appointments, understanding sexuality and relationships, and engaging in hobbies and recreation.
    • Looking ahead: The transition plan ends with a ‘looking ahead’ to a time when caregivers will not be able or available to care for their autistic children. It ties this section to the pre-planning brainstorm; the dreams parents have for their children. It suggests starting to compose legal documents, set financial goals, and transfer decision-making power as the child becomes of majority age and any support they might need. Planning for the future, including determining future guardianship, ensures that adults with autism are supported and cared for throughout their life.

At ASAT, we believe this guide offers a valuable reference point for autistic individuals and their caregivers. First it is well thought out, organized, and written in a user-friendly format making it easy to read and understand. Second, it outlines all the different areas caregivers, and the autistic individual may wish to direct their efforts and resources as they plan for transition. Third, it offers a comprehensive list of resources that caregivers can use at the different stages of their planning, including worksheets for goal setting, a list of the life and functional skills to teach, jobs that autistic individuals can do, the accommodations they would need, among others. Last, the guide is available for free and can be downloaded from the OAR website.

Reference for this article:

Wayua, C. (2025). Review of OAR’s Life Journey through autism: A guide for transition to adulthood. Science in Autism Treatment, 22(6).

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