Transition to Adulthood: Meeting Post-Secondary Needs of Older Adolescents Lynne Weissmann LWeissmann@aol.com UC Davis M.I.N.D. Institute Summer Institute on Neurodevelopmental Disorders August 7-8, 2008

Parent Perspective Lynne Weissmann, parent of 21 year old son with Autism Spectrum Disorder/Asperger Syndrome Diagnosed at age 8 at UC Davis Center for Psychiatry Co-Founder of Sacramento Asperger Syndrome Information & Support groups in 1995 Currently three groups including parent & caregiver and two older teen/adults with ASDs groups www.sacramentoasis.com

When to start transition planning? As soon as diagnosis is made Parent becomes “project manager” Begin teaching effective self-advocacy practices across all environments Include in IEP goals every year Builds confidence and competence Individualized supports in middle and high school – see attached article for strategies Diploma vs Certificate of Completion consideration

Definition of transition services Individuals with Disabilities Act (IDEA) definition of transition services “Co-ordinated set of activities” for a child with a disability to help them move from school to post-school activities “Designed to be a results-oriented process, that is focused on improving the academic and functional achievement of the child” Includes “Post-Secondary Education, vocational education, integrated employment, continuing and adult education, adult services, independent living, or community participation” “Is based on the individual child’s needs, taking into account the child’s strengths, preferences and interests”

What else does IDEA mandate? 2004 reauthorized version of IDEA added “further education” Provides a free and appropriate public education (FAPE) “designed to meet their unique needs and prepare them for further education, employment, and independent living” Appropriate measurable postsecondary goals must begin “not later than first IEP, to be in effect when the child turns 16 and then be updated annually thereafter” Postsecondary goals are “based upon age-appropriate transition assessments related to training, education, employment and independent living skills, where appropriate” Transition services need to assist the child in reaching those goals, including courses of study Obtain Transition to Adult Living resource guide (free) from CDE can be ordered or downloaded from website: www.calstat.org/info.html

Parent as Project Manager (revisited) Goals to achieve successful self-advocacy need to be tackled from different angles, some examples: Ability to communicate appropriately whether child is verbal or non-verbal, requires ongoing assessments and goals with speech therapist While working on above identified goals, build in flexibility to give child timely opportunities to work through real-life issues as they arise Teach, practice and real-life experiences with follow-up self-assessment using methods that are compatible with child’s learning-style (makes it meaningful, make it relevant) – both in school and at home Involve child in decision-making about their preferences, especially by middle and high school Include them in the IEP and/or core team meetings and reviews – start slowly and incrementally build up over time, allow them to appropriately express how they feel both positively and negatively and state their needs and wishes

Parent as Project Manager – cont. When to determine whether child is on diploma vs certificate of completion track? No set timeline, individual to each child Consideration may be ability to pass high school exit exam (CAHSEE in CA), still under review for children with disabilities, current information on CDE website Still need to “offer a course of study that prepares them for employment, independence and integration into the community” Students who do not receive general education diploma have the right to access special education services until the age of 22 When Certificate of Completion is attained, student has the right to participate in all graduation ceremonies Focus on attaining a balance of academic achievement (with curriculum modifications, if necessary), independent living skills and social development until diploma or certificate is received

Parent as Project Manager – cont. Make exit IEP meaningful, do not treat lightly, view as blueprint for what’s next Obtain updated, confirming diagnosis with recommendations for supports if attending college With your child’s permission, sit-in on initial meeting(s) with college disabilities counselor Let child lead, if possible, with support from you as necessary The parent/caregiver is the constant in their child’s life and need to take the lead in guiding the people, services and programs that will help to shape their child’s future

Final Thoughts Access to effective supports and services needs to be available throughout the lifespan of individuals with Autism Spectrum Disorders, regardless of the age they are first diagnosed. The essential goals for our children are the same as for all children: the ability to function successfully across environments, achieve their maximum potential and, most importantly, be fulfilled while following their unique life path that is meaningful for each individual. …”the ability to function adequately in adult life may depend as much on the degree of support offered (by families, educational, employment and social services) as much as basic intelligence” (Lord and Venter, 1992, Mawhood and Howlin, 1999)

Acknowlegements Professionals whose body of work has inspired and continues to inspire me Sally Ozonoff, PhD Patricia Howlin, PhD Paula Jacobsen, LCSW Uta Frith, PhD Nancy Minshew, MD Tony Attwood, PhD Lorna Wing, MD Professional friends and colleagues Susan Bacalman, LCSW Marilyn Perry, MFT, PhD Professionals who have made a difference in my son’s life and I’ve learned so much from Patricia Schetter, MA Sally Fitts, LCSW Robert L. Blanco, MD Terri Kimball-Hall, MS/CCC-SLP My husband, whose support and wisdom is always there for us – and our son, who continues to amaze me, and patiently taught me to use PowerPoint to create this presentation

Resources Unwritten Rules of Social Relationships, Temple Grandin and Sean Barron College Students with Asperger Syndrome: Practical Strategies for Academic and Social Success, Louise E. Bedrssian, Rodney E. Pennarmon Autism and Asperger Syndrome: Preparing for Adulthood, Patricia Howlin, 2nd Ed, 2004 Preparing for Life Dr. Jed Baker