Transition Planning for Children With Autism

My son is nine and in elementary school. I’ve heard a lot about transition plans and planning for his future, but I just don’t know when and where to start. Is it too early to begin planning for his transition or am I already late to this process?

LynzeeRose Masiello, MSOT, OTR/L
Manhattan Star Academy, YAI

Navigating and Advocating for Your Child’s Transition Plan into Adulthood

Transition Planning for Children With Autism Compared to adults with other disabilities, post-school outcomes are the poorest for autistic young adults, who have the lowest employment rates and lowest rate of activities after school. These findings suggest that targeting transition planning for individuals with autism is needed to address barriers to participating in post-secondary opportunities (Taylor et al., 2012). Individual Education Plan (IEP) teams tend to overlook the support that a transition plan can provide to a student. As a parent, I recommend that you educate yourself about the requirements of transition assessments, plans, and services for successful planning to adulthood. We understand that the transition process can be overwhelming and confusing for many families and can often come with mixed feelings of anxiety, worry, or fear. In working with families on understanding and creating a transition plan for a successful move from school-based services to adulthood, I often hear parents make comments such as “We are just navigating to manage today’s plan”, or “Asking me to plan for my child 5 years or 10 years from now is impossible,” to which I often respond with the following analogy:

Let’s pause, and view transitions as a runway before the plane takes off. It is a long runway, and the earlier the runway starts, the better lift the plane will have as it moves and travels to its next destination. Like a plane taking flight, there are many parts: the preparation, the takeoff, and the landing. In the following, you will read about the preparation of a transition plan, how to ensure your child is receiving adequate transition support and identify the point persons you may need to seek out to plan accordingly.

Where to start first?

Identify the laws in place, both federally and locally

Federally, the Individuals with Disabilities Education Act (IDEA) recognizes that students with disabilities require support to prepare for life after school (IDEA, 2017). The act deemed transition planning as a mandated process for all students who have an Individualized Education Program (IEP) K-12 education. It includes requirements for school districts to develop specific written transition plans that provide services that help students transition from educational services into adult life. It states that the planning must start before the student turns 16, it must be individualized, and it must be based on the student’s strengths. The related regulations can be found here. The IEP should include goals to support the student’s post-secondary achievements, or achievements after a student ages out at the age of 21. These goals can include education/training, employment, and/or independent living. For a more specific checklist to see if a goal currently written for your child is appropriate, you can refer to the NSTTAC Indicator 13 Checklist: Form A

Locally, all states are required to offer transition services at 16. However, some states require transition planning at younger ages. Each state has a different law for when to start this process, some earlier than others. The New York and New Jersey Department of Education, for example, have mandated that transition planning should start at the age of 14. For additional information, see the NJ Transition Toolkit. Later in this article, we will discuss further what transition services might look like before the age of 16 and who to seek out if you require additional support throughout the transition process.

It would also be important to identify your local developmental disability office. This is where you can begin to apply for both current support needs and future long-term planning needs. In NY, this is the Office for People with Developmental Disability; in NJ, this is New Jersey’s Division of Developmental Disabilities (DDD). The process of eligibility can be long and will often include an interview with the person and their family to identify the information needed to determine eligibility for DDD services. Necessary documentation that will most likely need to be collected may include information about the person’s functional abilities, Social Security card, Medicaid card, birth certificate, and diagnosis of a disability. In addition, they will request written permission to obtain school records, psychological test reports, and medical records that assist in determining eligibility. For further information specific to students entering the Division of Developmental Disability services within New Jersey, you can seek out the Department of Human Services website.

Advocate for your child’s plan to be in place

According to Gerhardt and Bahry (2023), “future planning should begin around age 10 and continue for the rest of their life” (p.53). To assist families in this process of advocacy, colleagues and I at the Manhattan Star Academy created the following steps to guide your planning efforts:

Seek out support from your child’s team

It takes a village of interdisciplinary support both in school and outside of school for a transition plan to be successful. It is key for the two worlds to collaborate as early as possible for many reasons. One, so that goals can be achieved more quickly and be more succinct, but also to acknowledge that school services for all children will stop at the age of 21. So, ask yourself, does your child have the necessary connections or support staff outside of school to carry them into services post 21 years of age? This question is important as it prepares families to best plan for the term known as the “service cliff.”, a term that refers to an individual’s loss of services once he/she turns 21 years of age. This is a large shift for the individuals and their families; therefore, a major part of the collaborative process of your child’s team will be to help determine priorities for transition. For example:

- A student receives hearing services in school 3x a week as mandated by that child’s IEP. This hearing teacher checks a student’s hearing aids, replaces batteries, and teaches those working with that student how to use them. Who would be identified to do this once the student is no longer in school?
- A student has a paraprofessional for toileting purposes. This student needs support with pulling down pants and wiping. This paraprofessional is known to the individual as a safe person. Who will teach this student this task once the student ages out? How will we support the student in identifying who can safely support them? What can we provide the student now to allow them to be more involved in their toileting process and generate more autonomy? Do we need to consider adaptive equipment? Do we need to consider wait time to allow them to initiate part of the task, or has the staff just completed the tasks for them?
- A student receives an Augmentative and Alternative Communication Device (AAC) for language, which was given to them by the Department of Education and is placed on the student’s IEP. This device, although specific to the student, is provided by the district and must be returned once the student is no longer in school. How will this learner communicate without this device after services? How can the student receive a device after they are 21 and who is going to maintain it?
- A student has been showing outbursts in the community, such as eloping, using foul language to others etc. What will the future opportunities for this learner look like as they get older? Why should this discussion generate urgency of the support team to address these behaviors?

These are just a few questions to start asking your child’s school team when navigating and building your child’s Transition Plan.

Advocate for meaningful goals

Goals created by your child’s team should be individualized, and meaningful. What makes a goal meaningful? It has been recommended when reading your child’s prescribed goal, to anchor the goal with the phrase “in order to” (Gerhardt et al. 2023). Gerhardt’s book, “Make it Meaningful” can be a useful resource for those seeking more information on navigating and building a meaningful life for their child. The functional activity written directly after the “in order to” should be reflective of a specific activity that your child is to perform independently.

For example:

John will engage with theraputty, retrieving 10 small manipulatives independently 50% of the time in 3/5 trials to increase fine motor strength.

If you receive a goal from your child’s team that you cannot identify a domain of independence, meaning it does not target your child’s activities of daily living (ADL, i.e., toileting, self-dressing, independent eating, self-management), ask further questions and advocate for a goal that will better target these important skill sets for adult life. For example, while the above goal could be purposefully written from a therapist’s perspective, does it attach to a meaningful activity for the individual? Suggest something like the following

John will engage with theraputty, retrieving 10 small manipulatives independently 50% of the time in 3/5 trials to increase his fine motor strength and ability to manipulate buttons on his shirt independently.

The addition of ability to manipulate buttons on his shirt independently targets a clear objective towards greater independence.

Gerhardt and Bahry (2023) utilize the mnemonic phrase (“Double digits, time to pivot”) to support families and clinicians in shifting their focus on service delivery. It is crucial that after the age of 10, goals shift to investigate generating more adaptive skills than academics. The bigger picture behind this is to always remember that what you are doing for your child now, if they do not learn the skill, will have to be done by someone else in the future. This is where we support and encourage our families to question the moments that can create a safety concern for our learners. If your child continues to need your full support in their toileting routine, someone, perhaps unfamiliar, will need to assist the learner in the bathroom.

Advocate for a Person-Centered Approach to Planning

Person-Centered Planning has been in existence since the 1980s and is “a template for assisting the individual with disabilities to express and document a living portfolio and plan for meaningful action toward one’s lifelong goals and desires” (Westgate & Blessing, 2005). A person-centered approach should engage the student in the conversations. It should include the student in the decision-making process allowing, ownership of the product. I often ask families, “When was the last time you had a meeting about your child with them there?”. Most often, the answer is “never.” Often, parents are having one-on-one meetings with their child’s therapists, teachers, and other team members, setting goals, and discussing progress, but the child receiving this support is not engaged in the conversation, therefore often lacking the “why” behind their day and often not being given the opportunity to provide their thoughts or listen.

Bannerman (1990) discussed that “everyone has the right and ability to make choices on some level” (p.82). Work with your child’s team to identify how to best allow and support your child to participate and understand what a Transition Meeting might be. I have utilized the Person-Centered Approaches in School and Transitions (PCAST) process most. The PCAST originated as a collaboration between The New Jersey Department of Education and the Office of Special Education, in partnership with The Boggs Center on Developmental Disabilities at Rutgers University and is widely utilized throughout New Jersey. One way to engage your child in the transition process is to reach out to their team to support them in finding the “just right level” for them to participate. Some examples could be the use of your child’s counselor to engage them in a conversation around “Who is in their circle of supports” to the Speech Language Pathologist to support the student in using their AAC device or their Occupational Therapist (OT) supporting the use of sensory breaks while in the meeting. Every student can participate and should be given the opportunity to be a part of the conversations surrounding their future.

While this reflects just the beginning of the transition planning, we hope that you feel more confident as a parent to inquire, ask, and seek out support to generate the best possible outcome for your child in understanding the transition timelines, as it is a lifelong process. I have compiled a checklist for your reference. A reminder that some of the ages are before 16 as the earlier the process starts the better the outcome.

Transition Planning Timeline and Checklist for Families

Task	Age
Identify and implement strategies to increase independence both at home and at school	As early as possible
Increase independence with activities of daily living: personal hygiene, dressing, toileting, etc.	As early as possible
Meet with a special financial planner, consider 529 savings account, ABLE accounts, whole life insurance, and gather information on special needs trusts	As early as possible
If you have not already done so, seek out your state’s disability services	As early as possible
Start promoting person-centered planning, person-centered meetings with your child’s team and including your child	13
School and/or community-based internships and vocational experiences should begin This is when your child should receive goals that become more “functional”, think “in order to…”	14-21
Explore transportation and mobility strategies Assess independence and home/ community Access-a-Ride Travel Training on Public Transportation Ride hailing services taxis, Uber, Lyft, etc.	15-21
Explore decision-making options for age 18 and older, including guardianship, supported decision-making, and power of attorney	16-18
Obtain non-driver’s personal ID Card (DMV)	16-18
Explore options for adult healthcare providers	17
Apply for or recertify for SSI	18
Start visiting post-21 programs	18-21
Partner with your state’s employment training programs and seek supported employment services	18-21

References

Bannerman, D. J., Sheldon, J. B., Sherman, J. A., & Harchik, A. E. (1990). Balancing the right to habilitation with the right to personal liberties: The rights of people with developmental disabilities to eat too many doughnuts and take a nap. Journal of Applied Behavior Analysis, 23(1), 79–89. https://doi.org/10.1901/jaba.1990.23-79

Gerhardt, P. F., & Bahry, S. (2023). Make it meaningful. Make It Meaningful LLC.

Gerhardt, P. F., Bahry, S., Driscoll, N. M., Cauchi, J., Mason, B. K., & Deshpande, M. (2023). Adulthood begins in preschool: Meaningful curriculum in support of increased independence for individuals with autism. International Electronic Journal of Elementary Education, 15(3), 213–223. https://doi.org/10.26822/iejee.2023.294

Taylor, J. L., McPheeters, M. L., Sathe, N. A., Dove, D., Veenstra-Vanderweele, J., & Warren, Z. (2012). A systematic review of vocational interventions for young adults with autism spectrum disorders. Pediatrics, 130(3), 531–538. https://doi.org/10.1542/peds.2012-0682

The Boggs Center on Disability and Human Development. (n.d.). Person-centered approaches in schools and transition. Person-centered approaches in schools and transition. https://boggscenterstage.rwjms.rutgers.edu/training-and-consultation/person-centered-approaches-in-schools-and-transition

Westgate, R. J., & Blessing, C. (2005). The power of person-centered planning. TEACHING Exceptional Children Plus, 2(2) Article 2. Retrieved August 15^th, 2024 from http://escholarship.bc.edu/education/tecplus/vol2/iss2/art2/

Reference for this article:

Masiello, L. (2025). Clinical Corner: How do caregivers begin transition planning for children with autism? Science in Autism Treatment, 23(1).

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How do Caregivers Begin Transition Planning for Children With Autism?