UCSF School Department of Family Office of Developmental of Medicine and Community Medicine Primary Care

Autism: Matching Therapy to Neurology

NJ Autism Center of Excellence January 27, 2021

Clarissa Kripke, MD, FAAFP Clinical Professor, Family and Community Medicine Director, Office of Developmental Primary Care Disclosure

I have nothing to disclose.

2 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Learning Objectives

. Is autism a disease? . What do we know about sensory and movement differences in autism? . What are the implications? . Is autism better accommodated when understood as a neurological difference? . What are self-advocates telling us? . Why should we listen?

3 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Is Autism a Thing?

neuromotor

cognition seizures

sensory

mental health/behavior

4 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Motor control Touch & pressure

Taste Concentration, planning, problem solving

Body awareness

Speech Language

Reading

Smell Vision

Hearing Coordinatio n Facial recognition

Office of Developmental Primary Care: https://odpc.ucsf.edu/ The original uploader was Fuzzform at English Wikipedia [GFDL (http://www.gnu.org/copyleft/fdl.html)], via Wikimedia Commons Torres, E., Brincker, M., Isenhower, R., Yanovich, P., Stigler, K., Nurnberger, J. I., . . . Jose, J. (2013). Autism: the micro-movement perspective. Frontiers in Integrative Neuroscience, 7(32). doi:10.3389/fnint.2013.00032

6 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Movement Ranges from Purposeful to Autonomic

Conscious Purposeful

Intentional

Highly practiced

Habitual

Automatic

Reflex

Spontaneous

Autonomic Unconscious Torres, E. Two Classes of movements in Motor Control. Exp Brain Res. 215:3-4, 2011.

7 Office of Developmental Primary Care: https://odpc.ucsf.edu/ What do we know about sensory and movement issues in autism?

. Many of the assumptions which are fundamental to the current paradigm of autism can and should be examined: - Performance does not equal intelligence. You can’t meaningfully test intelligence in people who don’t have a fluent form of expressive communication - Not all behavior is communication—some behavior is an artifact of difficulty organizing and regulating sensation and movement - Intelligence isn’t a fixed trait or capacity

8 Office of Developmental Primary Care: https://odpc.ucsf.edu/ What are the implications of these differences?

. Choosing therapeutic approaches needs to be individualized. . Use caution when applying “evidence” . Working with sensory and movement differences is more effective than working against them. . Everybody needs a fluent form of expressive communication. That needs to be an early, top, priority. Don’t give up. . Because of unconscious bias, people are routinely underestimated.

9 Office of Developmental Primary Care: https://odpc.ucsf.edu/ How to apply evidence?

. Is my client similar to the subjects of the study? (merely having an “autism” diagnosis isn’t enough) . Are the outcome measures meaningful? . Are the methods used valid? . Is the therapy available? . What are the risks? . Is the treatment consistent with individual and community values?

Masic I, Miokovic M, Muhamedagic B. Evidence based medicine - new approaches and challenges. Acta Inform Med. 2008;16(4):219– 225. doi:10.5455/aim.2008.16.219-225

10 Office of Developmental Primary Care: https://odpc.ucsf.edu/ What are self-advocates telling us?

Rethinking Autism and Therapeutic Approaches https://www.youtube.com/watch?v=obVvXcwTgtw

11 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Why should we listen? . It leads to better education, opportunities and communication. . It reduces burnout of parents and staff. . Parents, therapists, schools, and students who are presuming competence and working with sensory and movement issues are getting remarkably good outcomes. See for yourself: - https://unitedforcommunicationchoice.org/documentaries- movies-and-television/ - https://unitedforcommunicationchoice.org/videos-of- advanced-learners/ - https://unitedforcommunicationchoice.org/user-blogs/

12 Office of Developmental Primary Care: https://odpc.ucsf.edu/ Works Questioning Current Paradigm for Understanding Autism

. Leary, Martha R., Donnellan, Anne, M. Autism: Sensory-Movement Differences and Diversity. 2012. Cambridge Book Review Press. Cambridge.

. Masic I, Miokovic M, Muhamedagic B. Evidence based medicine - new approaches and challenges. Acta Inform Med. 2008;16(4):219–225. doi:10.5455/aim.2008.16.219-225 . Shyman, Eric. Besieged by Behavior Analysis for Autism Spectrum Disorder. 2015. Lexington Books, Lanham.

. Silberman, Steve. Neurotribes: The Legacy of Autism and the Future of Neurodiversity. 2015. Penguin Random House. New York.

. Torres, Elizabeth. Autism: The Movement Perspective. 2015. Frontiers in Neuroscience. https://www.frontiersin.org/research-topics/801/autism-the-movement-perspective . Torres, E., Brincker, M., Isenhower, R., Yanovich, P., Stigler, K., Nurnberger, J. I., . . . Jose, J. (2013). Autism: the micro-movement perspective. Frontiers in Integrative Neuroscience, 7(32). doi:10.3389/fnint.2013.00032

. Torres, E. Two Classes of movements in Motor Control. Exp Brain Res. 215:3-4, 2011.

13 Resources on Rethinking Possibilities for People with Autism and other Complex Disabilities

. Autism and Communication Center. California Lutheran University. https://www.callutheran.edu/centers/autism/ . CommunicationFirst. https://communicationfirst.org/. . Habib, Dan. Intelligent Lives. https://intelligentlives.org/ . Office of Developmental Primary Care. http://odpc.ucsf.edu, especially Everybody Communicates: Toolkit for Accessing Communication Assessments, Funding, and Accommodations. https://odpc.ucsf.edu/communications-paper . Think College. https://thinkcollege.net/ . United for Communication Choice. https://unitedforcommunicationchoice.org/.

14 Resources by Self-Advocates

. Deej. https://www.deejmovie.com/ . Emma’s Hope Book https://emmashopebook.com/. Also, 30 minute film Emma directed and starred in, Unspoken https://www.unspokendoc.com/ . Faith, Hope and Love…With Autism http://faithhopeloveautism.blogspot.com/search?q=communication . Hari’s Blog http://journal4hari.blogspot.com/p/autism.html . Higashida, Naoki. The Reason I Jump: The Inner Voice of a Thirteen-Year- Old Boy with Autism. 2016. Random House Trade Paperback, New York. . Kedar, Ido. Ido in Autismland: Climbing Out of Autism’s Silent Prison. 2012. . Kedar, Ido. In Two Worlds. 2018. Double Buck Publishing, LLC. . Mukhopadhyay, Tito, R. Plankton Dreams: What I Learned in Special-Ed. http://www.openhumanitiespress.org/books/titles/plankton-dreams/ . Wretches and Jabberers. https://www.wretchesandjabberers.org/

15 Office of Developmental Primary Care 500 Parnassus Avenue, Box 0900 Tel: 415-476-4641 | Fax: 415-476-6051 email: [email protected] web: http://odpc.ucsf.edu

16 Office of Developmental Primary Care: https://odpc.ucsf.edu/