Videos From Autism Science Foundation Annual Day of Learning

Videos From Autism Science Foundation Annual Day of Learning

The Day of Learning at the Autism Science Foundation (ASF), is a TED-style science conference that brings together leading autism researchers to present new findings to members of the autism community. Due to the coronavirus pandemic, this year’s Day of Learning was held virtually. Over 800 people from across the world took part in the event.

Below are links to recorded presentations paired with ways to learn more on topics on the INformation Network website.

Do We Need New Terms for Autism? – Dr. Catherine Lord – School of Medicine at UCLA

Dr. Lord called for a new term: “profound autism.” Announced publicly for the first time at the Day of Learning, the term is intended to help individuals with the highest level of needs gain access to appropriate services and to increase research participation by this understudied subpopulation.

Read More: What is ASD?

Autism Research in 2020: What Do We Know? What Do We Need? – Dr. James McPartland – Yale Child Study Center

Dr. McPartland explains that many of the advancements made this year amid the pandemic will benefit individuals on the autism spectrum long after the current crisis is over.

Read More: About the Diagnosis, What is Evidence-Based?

Developing Personalized Social Interventions for Adolescents with Autism – Dr. Matthew Lerner – Stony Brook University

Dr. Matthew Lerner explained how he and his team are moving toward an “evidence-based menu” of interventions to develop social skills in adolescents with autism, which will allow families to take more targeted actions to improve outcomes.

Read More: Transition

Is ABA Passe? – Dr. Melanie Pellecchia – University of Pennsylvania

Dr. Pellecchia outlined some of the historic problems of applied behavioral analysis (ABA) and showed how increased knowledge of childhood development has significantly improved the practice in recent years, with a greater emphasis on fun, play-based therapy sessions and a de-emphasis on “teacher-led, didactic” sessions.

Read More: Applied Behavior Analysis

Research on Adults with Autism in Natural Settings – Dr. Vanessa Hus Bal – Rutgers University

Dr. Hus Bal argued that while support for adults with autism often focuses on the transition to adulthood and associated milestones, there is not enough being done to provide adults with ongoing support throughout their lives.

Read More: Adulthood and Aging

Robots as Autism Therapy Partners – Dr. Brian Scasselatti – Yale University

Dr. Scassellati demonstrated the powerful effect that robots can have as autism therapy partners and explained what parents should look for in evaluating these solutions.

Read More: Technology

Considerations for Medical Transition

What is healthcare transition?

Healthcare transition is an individualized process used to address the comprehensive health care needs of children as they age into adulthood and is designed to maximize lifelong functioning and potential by providing patient-centered care during that transition (Rast et al., 2018).

Why does healthcare transition and healthcare plan improve outcomes?

Improved healthcare transition and comprehensive health care can improve the health outcomes of individuals with ASD. Yet, fewer than 10% of youth with ASD meet the national transition core outcome (Walsh et al., 2017). Young people with special health care needs, including autism, often have:

  • more outpatient and inpatient hospital visits that are longer in mean duration,
  • more emergency department visits,
  • more primary care and psychiatric visits,
  • more health care claims, and
  • higher health care expenditures than their peers (Rast et al., 2018).

Transfer to Adult Care

What is a recommended healthcare transition timeline for providers?

Recommended Health Care Transition Timeline for Providers is as follows:

  • Age 12: Make youth and family aware of transition policy
  • Age 14: Initiate health care transition planning
  • Age 16: Prepare youth and parents for adult model of care and discuss transfer
  • Age 18: Transition to adult model of care
  • Age 18-22: Transfer care to adult medical home and/or specialists with transfer package
  • Age 23-26: Integrate young adults into adult care

Source: Got Transition?

Are You Ready for Transition to Adult Health Care?

Check out Got Transition?

Additional Resources:

Health Care Transitions FAQ

Domains for Independent Living

What are the domains for independent living and community participation?

Independent living and community participation involves at minimum the following:

  1. Leisure and recreation: activities or experiences of interest chosen for fun, enjoyment, or enrichment during time free from obligations
  2. Home maintenance and personal care, including domestic and self care skills, like personal hygiene skills, clothing care, cooking, planning meals, housekeeping, etc. 
  3. Community participation: access and use community environments and agencies, including shopping, community and government services, voting, paying taxes, etc.
  4. Transportation/Mobility: ability to travel safely by foot, bicycle, bus, train and/or car
  5. Money management, including managing bank accounts and credit cards
  6. Personal safety and health care both at home and in the community, including the knowledge of personal information, use of pones for emergencies, use of first aid
  7. Communication and interpersonal relationships: ability to communicate basic needs, comprehension of instructions and gestures, and response to commands and prohibitions.
  8. Self determination: ability to know themselves, control their lives, plan and reach their goals and self-advocate

(Cronin, 1996; Halpern, 1994; Nietupski & Hamre-Nietupski, 1997)

Additional Resources:

Sexual Health Class Research Survey

Individuals with ASD rarely get sufficient and/or reliable information about healthy sexual behaviors from traditional sources, like at school or from parents/caregivers, which often results in an increased risk of becoming victims of sexual crimes or perceived offenders (Brown-Lavoie, Viecili, and Weiss, 2014). Reviews and research related to the sexual health curriculums used within schools or educational settings for individuals with ASD is sparse with some indication of the absence of any existing or adapted curriculum in regular use. Removal of these students from sexual health classes means they are left to obtain information from unmonitored sources.

This brief survey is designed to gain insight from a variety of stakeholders (i.e., family members/caregivers, teachers, school admin, or individuals with a disability) regarding sexual health knowledge and the programs provided within an educational setting for students with disabilities.

As a thank you for your participation, you will receive a PDF info sheet with practical strategies for providing resources and skills teaching materials related to sexual health as a step towards preventing sexual abuse or victimization of individuals with disabilities. Please consider sharing this survey with friends and colleagues alike.

Please contact Naomi Swiezy, Ph.D., HSPP, Director, HANDS in Autism® Interdisciplinary Training and Resource Center at nswiezy@iupui.edu or Tiffany Neal, Ph.D., Assistant Director, HANDS in Autism® Interdisciplinary Training and Resource Center at nealtiff@iupui.edu with any questions, concerns, or additional comments.

Transition

On this page, you can explore the following topics (click on the topic of interest):

Video: IIACC Goal in Focus – Successful Transition to Adulthood: Overview

Overview

As individuals with ASD approach adulthood, families should begin to consider and develop a plan for the transition from school to adult life. This transition period is an important time for individuals to explore:

  • educational,
  • vocational, or
  • independent living options,
  • enhance and learn new life skills,
  • become familiar with various support agencies and resources, and
  • chart a course for a successful life based on their abilities, needs, and desires.

This period can also present a number of challenges, as some of the supports that individuals were able to access during their years in school may not be as readily available into adulthood, and individuals and families are responsible for coordinating a number of services on their own without the assistance of an educational agency.

However, with proper planning and an understanding of available resources and supports, families can prepare for a smooth transition to adult life.

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When Should I Begin Planning for My Child’s Transition into Adulthood?

Indiana’s Special Education Rules (known as “Article 7”) state that students with disabilities are eligible to receive free and appropriate public education (FAPE) until age 22. Article 7 also mandates that a student with disabilities receiving public education must have a transition individualized education program (IEP) in effect by the time he or she enters into 9th grade or turns 14 years old, whichever occurs first. So, while it is never too early to begin developing independent life skills that will aid the transition process, many families in Indiana begin transition planning around the age of 14. Because the funding and services offered to students under the Individuals with Disabilities Education and Improvement Act (IDEIA) are not available once the student receives a high school diploma or ages out of the school system, it is important to take advantage of these supports while they are available and to plan for a successful transition well before the student leaves high school.

In developing a transition IEP, a case conference committee (CCC) comprised of various school professionals and the student’s parent(s) will meet alongside the student to outline the student’s present level of academic achievement, which is an assessment of the student’s:

  • strengths
  • preferences
  • interests
  • appropriate goals for transition (related to education, employment, training, and/or independent living)
  • applicable transition services
  • agencies available to assist with these goals, and
  • other considerations related to the educational services that the student will receive through the remainder of his or her enrollment at the school.

For an exact breakdown of the required components of a student’s transition IEP, as well as additional rights, procedures, and considerations related to students of transition age, refer to Article 7.

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What Topics Should be Considered when Creating a Transition Plan for an Individual with ASD?

The process of transition planning is specific to the needs, skills, desires, interests, and abilities of the individual, so there is no single path or plan that is appropriate for all individuals. An effective plan should account for the individual’s unique preferences and goals and be developed with input from the individuals, his or her parents, and school/other professionals with a thorough understanding of what is appropriate for the individual.

While no two transition plans are the same, the Individuals with Disabilities Education and Improvement Act (IDEIA) and Indiana’s Special Education Rules (known as “Article 7”) outline a number of considerations that should be accounted for when developing and reviewing an individual’s transition IEP, with goals set based upon the specific aspects of an individual’s life. These include, but are not limited to, the following:

  • Facilitating a student’s movement to post-school activities, including:
    • Post-secondary education
    • Vocational training
    • Community employment
    • Adult services
    • Independent living or
    • Community participation
  • Assessing the individual’s needs, strengths, and preferences as they relate to:
    • Academic instruction
    • Community experiences
    • Post-school adult living aspirations, such as employment or post-secondary education
    • Daily living skills
  • Determining whether the individual will pursue a high school diploma or certificate of completion
  • Developing measurable goals related to achieving the individual’s preferred post-school objectives (such as education, employment, etc.)
  • Establishing appropriate transition services and agencies to assist the student in reaching post-secondary goals
  • Identifying necessary accommodations and/or placement to assist the individual in achieving post-secondary goals

Assessing an individual’s interests, preferences, and strengths in conjunction with his or her current level of academic achievement will help identify the appropriate post-secondary goals as they relate to education, employment, and/or independent living, as well as the necessary diploma or certificate that the individual should work to obtain. Upon the establishment of these objectives, the necessary transition services, annual goals, and benchmarks can be determined and reviewed to ensure the individual’s course of study aligns with his or her post-secondary goals.

In addition to a transition IEP within the school setting, individuals and families may choose to develop transition plans related to other aspects of an individual’s life. Just as a transition IEP takes into account an individual’s unique skills, abilities, preferences, interests, and needs, transition plans within other settings should be specific to the individual and his/her particular situation. The LifeCourse Framework, developed by the National Community of Practice for Supporting Families of Individuals with Intellectual and Development Disabilities, provides a helpful series of tools to help families and individuals map out a successful life for individuals of all ages and across community settings. This framework may help complement an individual’s transition IEP or prove to be beneficial as he or she transitions into different stages of adult life, faces new challenges, or develops new skills and interests. Long-term transition planning is designed to be an ongoing process that reflects an individual’s continual development and shifting needs, so transition plans should be frequently reviewed, adjustment, and updated to ensure it meets the specific needs of the individual.

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What is the role of the family in the transition process?

One of the most important aspects of transition planning is ensuring that the individual’s wants and needs remain at the forefront of the planning process. Parents and other family members are an individual’s primary advocates, and they serve an important role in the transition process. Families should help the individual prepare for transition by helping them develop independent life skills (such as decision-making, daily living skills like cooking and cleaning, etc.), helping the individual to explore and define goals for life after high school, and ensuring that the individual is always the focus of the planning process. Parents are encouraged to attend all IEP meetings and take an active role as part of the individual’s case conference committee (CCC), contact and visit agencies within the area that provide resources and supports for transition-age individuals, and maintain open communication with teachers and other providers in an individual’s life to ensure the transition plan fully supports the individual’s preferences and needs. Individuals and their families are the primary decision makers in the transition planning process, so they are tremendously valuable in realizing a successful life for individuals with ASD.

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Additional Resources

References

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